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World Alzheimer Report 2015

The Global Impact of Dementia

An analysis of prevalence, incidence, cost and trends

Authors
Prof Martin Prince
The Global Observatory for Ageing and Dementia Care,
Kings College London, UK

Prof Anders Wimo


Department of Neurobiology, Care sciences and Society,
Karolinska Institute, Stockholm, Sweden

Dr Malenn Guerchet
The Global Observatory for Ageing and Dementia Care,
Kings College London, UK

Miss Gemma-Claire Ali


The Global Observatory for Ageing and Dementia Care,
Kings College London, UK

Dr Yu-Tzu Wu
Cambridge Institute of Public Health, University of Cambridge, UK

Dr Matthew Prina
The Global Observatory for Ageing and Dementia Care,
Kings College London, UK

Chapter 1
Prof Martin Prince
Chapter 2
Gemma-Claire Ali
Dr Malenn Guerchet
Dr Yu-Tzu Wu
Prof Martin Prince
Dr Matthew Prina
Chapter 3
Dr Malenn Guerchet
Gemma-Claire Ali
Prof Martin Prince
Dr Yu-Tzu Wu
Chapter 4
Prof Martin Prince

Alzheimer's Disease International

Chapter 5
Prof Martin Prince

Contributors

Chapter 6
Prof Anders Wimo
Prof Martin Prince

Dr Kit Yee Chan


Centre for Global Health Research, University of Edinburgh Medical
School, Edinburgh, UK
School of Public Health, Peking University Health Science Center,
Beijing, China
Nossal Institute for Global Health, Faculty of Medicine, Dentistry and
Health Sciences, University of Melbourne, Melbourne, Australia

Ms Zhiyu Xia
School of Public Health, Peking University Health Science Center,
Beijing, China

Published by Alzheimers Disease International (ADI), London.


ADI is fully responsible for the content.
August 2015.
Republished with corrections October 2015.
See www.alz.co.uk/worldreport2015corrections
Copyright Alzheimers Disease International.

Acknowledgements

This report was supported by Bupa,


for which we are very grateful.

Cover and Chapter 1, 3, 5 and 7 photos iStock


Chapter 2 and 6 photos Bupa
Chapter 4 photo Alzheimer's & Related Disorders Society of
India (ARDSI)
Design - David OConnor - www.daviddesigns.co.uk
All the authors and investigators of dementia studies who
provided us more specific data from their work.

Chapter 7
Prof Martin Prince
Alzheimer's Disease International

The Global Impact of Dementia

Foreword
Today, over 46 million people live with dementia worldwide, more than the population of
Spain. This number is estimated to increase to 131.5 million by 2050.
Dementia also has a huge economic impact. Today, the total estimated worldwide cost
of dementia is US $818 billion, and it will become a trillion dollar disease by 2018. This
means that if dementia care were a country, it would be the worlds 18th largest economy,
more than the market values of companies such as Apple (US$ 742 billion), Google (US$
368 billion) and Exxon (US$ 357 billion).
In many parts of the world, there is a growing awareness of dementia, but across the
globe it remains the case that a diagnosis of dementia can bring with it stigma and
social isolation. Today, we estimate that 94% of people living with dementia in low and
middle income countries are cared for at home. These are regions where health and care
systems often provide limited or no support to people living with dementia or to
their families.
The 2015 World Alzheimer Report updates data on the prevalence, incidence, cost and
trends of dementia worldwide. It also estimates how these numbers will increase in the
future, leaving us with no doubt that dementia, including Alzheimers disease and other
causes, is one of the biggest global public health and social care challenges facing
people today and in the future.
The two organisations we lead are ADI, the only worldwide federation of Alzheimer
associations and global voice on dementia, and Bupa, a purpose-driven global health and
care company that is the leading international provider of specialist dementia care, caring
for around 60,000 people living with dementia each year. Together, we are committed
to ensuring that dementia becomes an international health priority. We believe national
dementia plans are the first step towards ensuring all countries are equipped to enable
people to live well with dementia, and help to reduce the risk of dementia for future
generations. There is now a growing list of countries which have such provision in place or
which are developing national dementia plans, but its not enough.
Given the epidemic scale of dementia, with no known cure on the horizon, and with a
global ageing population, were calling on governments and every part of society to
play an active role in helping to create a world where people can enjoy a better quality
of life today, and also help reduce the risk of dementia for future generations. It is our
belief that this report will help sustain the momentum of recent global collaboration,
mobilising governments, policy makers, health care professionals, researchers, Alzheimer
associations, and businesses, to work together on a solution for the global challenge of
dementia.
Providing a better quality of life for people with dementia can be a reality, but only if
governments and societies make it an urgent priority. Were committed to making
this happen.

Glenn Rees

Stuart Fletcher

Chairman
Alzheimers Disease
International

CEO
Bupa

Alzheimers Disease International: World Alzheimer ReporT 2015

INFOGRAPHIC

The global impact of dementia

The total estimated worldwide cost of


dementia in 2015 is US$ 818 billion.
By 2018, dementia will become
a trillion dollar disease, rising to

US$ 2 trillion
by 2030

Around the world, there will be 9.9 million


new cases of dementia in 2015,

one every
3 seconds

2015

2018
Dementia
$818
billion

If global dementia care were


a country, it would be the

131.5
74.7
46.8 million people worldwide are

46.8

million

million

million

18th largest
economy
in the world exceeding the
market values of companies
such as Apple and Google

Apple
$742
billion

Google
$368
billion

(source: Forbes 2015 ranking).

living with dementia in 2015.

This number will almost


double every 20 years.
EUROPE

10.5

2015

MILLION

2030

68%
2050

2050

THE
AMERICAS

9.4

MILLION

Much of the increase


will take place in low
and middle income
countries (LMICs):
in 2015, 58% of all people
with dementia live in LMICs,
rising to 63% in 2030
and 68% in 2050.

This map shows


the estimated
number of
people living
with dementia
in each world
region in 2015.

ASIA

AFRICA

4.0

22.9

MILLION

We must now involve more


countries and regions in the
global action on dementia.

MILLION

The Global Impact of Dementia

Alzheimers Disease International

World Alzheimer Report 2015


The Global Impact of Dementia

An analysis of prevalence, incidence, cost & trends

The Global Observatory


for Ageing and Dementia Care
The Global Observatory for Ageing and Dementia Care, hosted at the Health Service
and Population Research Department, Kings College London, was founded in 2013.
Supported by Alzheimers Disease International, and Kings College London, the
Observatory has a tripartite mission:
1. To build upon ADIs 10/66 Dementia Research Group program of population-based
and intervention research in low and middle income countries, maximising the impact
that research findings from our data can have upon policy and practice.
2. To develop, evaluate, and promote primary care and community interventions for
people with dementia.
3. To synthesise global evidence for policymakers and public, in particular, continuing
and developing our role in the preparation of high impact evidence-based reports for
Alzheimers Disease International (World Alzheimer Reports 2009, 2010, 2011, 2013 and
2014, and Nutrition and dementia), the World Health Organization (Dementia: a public
health priority, 2012) and other relevant intergovernmental organisations.
The World Alzheimer Report 2015 was independently researched and authored by Prof
Martin Prince, Prof Anders Wimo, Dr Malenn Guerchet, Gemma-Claire Ali, Dr YuTzu Wu and Dr Matthew Prina, with contributions from others as listed. The evidence
reported in Chapters 1-6, and the inferences drawn, are the responsibility of the authors
alone. Chapter 7 was developed by the Global Observatory and Alzheimers Disease
International.

Alzheimers Disease International: World Alzheimer ReporT 2015

Contents
In summary 1
Chapter 1

Introduction 6
Dementia in a rapidly changing world 6
Economic development 7
Population ageing in a developing world 7
Most lower income countries will remain relatively poor, and
face particular challenges 8
Chapter 2

The global prevalence of dementia 10


Introduction 10
Methods 10
Results 12
Conclusions and recommendations 25
References 27
Chapter 3

The incidence of dementia 30


Introduction 30
Methods 30
Results 31
Discussion 34
References 35
Chapter 4

Current and future secular trends 36


Introduction 36
Research evidence 37
Conclusion 43
References 45
Chapter 5

The impact of dementia worldwide 46


Introduction 46
The Global Burden of Disease approach (GBD) 46
Alternative approaches to understanding the impact of
dementia 51
Conclusion 54
References 54
Chapter 6

The worldwide costs of dementia 56


Introduction 56
Methods 56
Results 58
Discussion 65
References 67
Chapter 7

Conclusions and recommendations 68


Summary 68
Global Action Against Dementia 70
Beyond the G7 process 71
Building upon the Global Action Against Dementia 71
Final conclusions and recommendations 78
References 79
Appendix A
Global Burden of Disease (GBD) Regions 81

The Global Impact of Dementia

WORLD REPORT 2015

In summary
CHAPTER 1

CHAPTER 2

Dementia and ageing in a developing world

The global prevalence of dementia

1. We have updated our previous estimates of the


global prevalence, incidence and costs of dementia.
As a new feature, we have included a systematic
review of the evidence for and against recent trends
in the prevalence and incidence of dementia over
time.

1. We have updated our 2009 systematic review of the


global prevalence of dementia, bringing the total
number of studies to 273. This is 116 more than we
found in 2009. Changes in estimates in this chapter
reflect inclusion of these new studies but cannot be
interpreted as secular trends, which are discussed
in Chapter 4.

2. There are almost 900 million people aged 60 years


and over living worldwide. Rising life expectancy is
contributing to rapid increases in this number, and
is associated with increased prevalence of chronic
diseases like dementia.
3. Between 2015 and 2050, the number of older people
living in higher income countries is forecast to
increase by just 56%, compared with 138% in upper
middle income countries, 185% in lower middle
income countries, and by 239% (a more than
three-fold increase) in low income countries.
4. Older people also constitute an increasing
proportion of total population, as the rise in life
expectancy is being accompanied by declining
fertility rates in most countries.
5. Poorer countries have fewer economic and human
professional resources to meet the health and
social care needs of their rapidly growing older
populations. Many of these countries face the
challenge of a double burden of persistently
high rates of maternal, childhood and infectious
diseases, combined with a growing epidemic of
chronic non-communicable diseases.
6. Even with the unprecedented benefits of double
digit annual economic growth, rapidly developing
countries in Asia and Latin America have struggled
to establish comprehensive and effective systems
of social protection for older people, failing to
guarantee adequate income and universal access to
health and social care.
7. Overall economic growth at the national level can
conceal gross inequities in income distribution, and
older people are often among the least likely and the
last to benefit directly from economic development.

2. Our regional estimates of dementia prevalence in


people aged 60 years and over now range from
4.6% in Central Europe to 8.7% in North Africa and
the Middle East, though all other regional estimates
fall in a relatively narrow band between 5.6 and
7.6%.
3. When compared to our 2009 estimates, estimated
prevalence has increased in Asia and Africa, but
decreased in Europe and the Americas.
4. We estimate that 46.8 million people worldwide are
living with dementia in 2015. This number will almost
double every 20 years, reaching 74.7 million in 2030
and 131.5 million in 2050. These new estimates
are 12-13% higher than those made for the World
Alzheimer Report 2009.
5. We estimate that 58% of all people with dementia
live in countries currently classified by the World
Bank as low or middle income countries. The
proportion of people with dementia living in these
same countries is estimated to increase to 63% in
2030 and 68% in 2050.
6. Continuing the trend noted in our 2009 report,
proportionate increases in the number of people
living with dementia will be much steeper in low
and middle income countries than in high income
countries. Between 2015 and 2050, the number
of people living with dementia in what are now
high income countries will increase by 116%. This
compares to a 227% increase in upper middle
income countries, 223% in lower middle income
countries, and 264% in low income countries.
7. Regions that stand out as persistently lacking in
research both in terms of number of studies and
relative to population size are Central Asia, Eastern
Europe, Southern Latin America, and Eastern and
Southern sub-Saharan Africa. Despite reasonable
coverage in terms of numbers of studies, the
evidence-base for South and Southeast Asia is still
sparse with respect to population size.

Alzheimers Disease International: World Alzheimer ReporT 2015

8. In our 2009 report, we noted a marked decrease


in dementia prevalence research in high income
countries since the 1990s. This trend has not been
reversed, causing the evidence-base to become
increasingly out of date.
9. Quality issues identified in 2009 are still common
among recent studies. We urge researchers
conducting prevalence studies to ensure that
two-phase study designs are correctly applied and
analysed, and to include an informant interview in
their diagnostic assessment of dementia.
CHAPTER 3

The incidence of dementia


1. We have updated our 2011 review of the global
incidence of dementia, bringing the total number of
studies to 62. This is 23 more than we found in 2011.
Of these, 12 new studies provided data in a format
that could be included in our age-stratified metaanalysis, which now comprises 46 studies.
2. Through meta-analysis of the available evidence,
we estimate over 9.9 million new cases of dementia
each year worldwide, implying one new case every
3.2 seconds. These new estimates are almost
30% higher than the annual number of new cases
estimated for 2010 in the 2012 WHO/ADI report (7.7
million new cases, one every 4.2 seconds).
3. The regional distribution of new dementia cases
is 4.9 million (49% of the total) in Asia, 2.5 million
(25%) in Europe, 1.7 million (18%) in the Americas,
and 0.8 million (8%) in Africa. Compared to our 2012
estimates, these values represent an increased
proportion of new cases arising in Asia, the
Americas and Africa, while the proportion arising in
Europe has fallen.
4. Overall incidence of dementia in low and middle
income countries is only 10% lower (RR 0.90, 95%
CI: 0.70-1.15) than in high income countries. In
contrast to our previous meta-analysis, this is not
statistically significant.
5. The incidence of dementia increases exponentially
with increasing age. For all studies combined, the
incidence of dementia doubles with every 6.3 year
increase in age, from 3.9 per 1000 person-years at
age 60-64 to 104.8 per 1000 person-years at age
90+.
6. The number of new cases increases and then
declines with increasing age in each region. In
Europe and the Americas peak incidence is among
those aged 80-89 years, in Asia it is among those
aged 75-84, and in Africa among those aged 65-74
7. The evidence-base continues to be dominated by
studies from Europe and North America, but less
so than in 2011. Of the 46 studies that could be
included in the meta-analysis, 19 were conducted
outside Europe and North America, and 17 were

conducted in low or middle income countries. 50%


of the 12 new studies were conducted in low and
middle income countries, up from just 32% of those
included in the original meta-analysis.
8. The studies included in the meta-analysis account
for 109,952 older people at risk, representing
332,323 person-years of follow-up. The Western
European studies account for 42% of the total
person years, the North American studies
24%, the East Asian studies 16%, and the Latin
American studies 13%. Just 5% of person-years
are contributed by the studies from Australasia,
Asia Pacific, South Asia and sub-Saharan Africa
combined.
CHAPTER 4

Trends in the prevalence and incidence of


dementia, and survival with dementia
1. Almost all current projections of the coming
dementia epidemic assume that age- and genderspecific prevalence of dementia will not vary over
time, and that population ageing alone drives the
projected increases. In reality, future prevalence
could be affected by changing incidence and
disease duration.
2. The prevalence of any condition is a product of
its incidence and the average duration of the
disease episode. Changes in either or both of these
indicators could lead to changes in age-specific
prevalence. Trends in the two indicators may not
move in the same direction; for example, reductions
in incidence might be accompanied by increases in
duration of survival with dementia, or vice versa, the
one effect tending to cancel out the other in terms of
their overall impact on prevalence.
3. One should not expect that secular trends will be
the same across all world regions, or even among
different population subgroups within one country.
Experience with changing rates of cardiovascular
disease, obesity, diabetes and cancer shows this
clearly. The considerable variability in secular
trends for these chronic diseases reflects different
degrees of progress in improving public health, and
in improving access to healthcare and strengthening
health systems and services to better detect, treat
and control these conditions.
4. In order to investigate this assumption, studies of
secular trends in dementia prevalence, incidence
and mortality were identified from the systematic
review of dementia prevalence studies, from the
reference lists of these studies, and by conducting a
search using the terms (dementia or alzheim*) and
(mortality or survival) and trend*.
5. Findings across the identified studies (mostly
conducted in high income countries) are currently
too inconsistent to reach firm and generalisable
conclusions regarding underlying trends. Three

The Global Impact of Dementia

studies are reporting significant or non-significant


decline in the prevalence of dementia (MRC-CFAS
(UK), Zaragoza (Spain) and HRS (USA)) while other
studies from Sweden and USA indicated a stable
prevalence of dementia. Another Swedish study
and two Japanese studies of trends in dementia
prevalence reported that prevalence had increased.
6. There has been a general trend in many high income
countries towards less smoking, lower cholesterol
and blood pressure, and increased physical activity.
On the other hand, the prevalence of obesity and
diabetes has been increasing. To the extent to which
these factors are causally associated with dementia,
one would expect to see corresponding changes in
dementia incidence.
7. In many low and middle income countries, the
trends in cardiovascular health among older
people are in an adverse direction, with a pattern
of increasing stroke, and ischaemic heart disease
morbidity and mortality, linked to an epidemic of
obesity, and increasing blood pressure levels. This
could result in upward trends in the incidence and
prevalence of dementia in these countries.
8. Since most of the public health interventions that
have been proposed to reduce the incidence of
dementia also have benefits in reducing incidence
and mortality from other chronic diseases, one
should expect that reductions in prevalence arising
from reduced incidence of dementia may be offset,
at least to some extent, by reduced mortality and
longer survival with dementia.
9. One indicator of successful dementia risk
reduction is deferral of dementia incidence to older
ages. By increasing the average age of onset,
dementia mortality may increase and duration
of survival with dementia fall, without changing
age-specific mortality for people with dementia.
This phenomenon described by Langa as the
compression of cognitive morbidity is a desirable
outcome for public health and individual quality of
life, as it represents dementia onset occurring closer
to the natural end of life.
10.Studies that use fixed methodology to estimate
changes in dementia prevalence, incidence and
mortality over time, in defined populations, are
uniquely valuable assets. It is important in the future
that more such studies are commissioned.
11. Previous modelling exercises have sought to predict
future trends in dementia prevalence, given our best
estimates of risk associations and changes in risk
factor profiles over time. In the light of the current
review, these estimations appear over-optimistic.
An alternative approach is to observe and correlate
actual changes in risk factor profiles and dementia
incidence over time. Similar studies could, in the
future, be carried out to monitor the impact of
prevention programs on the future scale of the
dementia epidemic.

CHAPTER 5

The impact of dementia worldwide


1. The impact of dementia can be understood at three
inter-related levels: the individual with dementia,
their family and friends, and wider society.
2. While dementia does shorten the lives of those
affected, its greatest impact is upon quality of life,
both for individuals living with dementia, and for
their family and carers.
3. Global Burden of Disease (GBD) estimates express
disease burden in terms of associated disability
and mortality. The key indicator disability adjusted
life years (DALYs) is calculated as the sum of Years
Lived with Disability (YLD) and Years of Life Lost
(YLL), thus reflecting disease effect on both quality
and quantity of life.
4. Revised GBD estimates using Institute of Health
Metrics and Evaluation (IHME) disability weights
have caused dementia to fall from 5th to 9th most
burdensome condition for people aged 60 years
and over. While burden from years of life lost (YLL)
remains stable across the two methodologies, there
has been a substantial reduction in the estimation
of years lived with disability attributed to dementia,
with a knock-on effect on the DALY estimates. Per
capita, the IHME GBD estimates of YLL are 0%
lower than WHO GBD estimates, YLD 65% lower,
and DALYs 54% lower. This is, for the most part,
because of changes in disability weights, which are
2/3 lower for the IHME than the WHO GBD, rather
than in the estimates of the frequency of these
disorders.
5. The most important critique of the GBD estimates
is that they fail to capture the full impact of chronic
diseases on disability, needs for care, and attendant
societal costs. This limitation is most significant for
older people and for conditions like dementia, where
most of the impact comes from disability rather
than associated mortality. Failure to reflect societal
impacts of dementia relative to other chronic
diseases makes the GBD estimates an unreliable
tool for prioritising research, prevention, and health
or social care among older people.
6. A UK study has estimated that the health and
social care costs for dementia almost match the
combined costs of cancer, heart disease and stroke.
In a Swedish study, the annual costs of dementia
exceeded those of depression, stroke, alcohol
abuse and osteoporosis. An analysis using data
from the 10/66 Dementia Research Group baseline
surveys in Latin America, India and China found that
the directly attributable cost of dementia exceeded
that of depression, hypertension, diabetes,
ischaemic heart disease and stroke in all countries
except India.
7. Dementia is typically associated with particularly
intense needs for care, exceeding the demands

Alzheimers Disease International: World Alzheimer ReporT 2015

associated with other conditions. In the USA,


caregivers of people with dementia were more likely
to be required to provide help with getting in and
out of bed, dressing, toileting, bathing, managing
incontinence and feeding than caregivers of people
with other conditions.

CHAPTER 6

The worldwide costs of dementia


1. The estimates of global societal economic costs
of dementia provided in this report have been
generated using the same general approach as
for the World Alzheimer Report 2010. Costs are
estimated at the country level and then aggregated
in various combinations to summarise worldwide
cost, cost by Global Burden of Disease world
region, cost by World Bank country income level,
and cost for G7 and G20 countries.
2. For each country, we have estimated cost per
person (per capita), which is then multiplied by
the number of people estimated to be living with
dementia in that country. Per capita costs are
divided into three cost sub-categories: direct
medical costs, direct social care costs (paid and
professional home care, and residential and nursing
home care) and costs of informal (unpaid) care.
Informal care is valued using an opportunity cost
approach, valuing hours of informal care by the
average wage for each country.
3. The global costs of dementia have increased from
US$ 604 billion in 2010 to US$ 818 billion in 2015, an
increase of 35.4%. Our current estimate of US$ 818
billion represents 1.09% of global GDP, an increase
from our 2010 estimate of 1.01%. Excluding informal
care costs, total direct costs account for 0.65% of
global GDP.
4. Regional distribution of costs has not changed
markedly from those published in 2010. Cost
estimates have increased for all world regions,
with the greatest relative increases occurring in the
African and in East Asia regions (largely driven by
the upwards revision of prevalence estimates for
these regions).
5. Distribution of costs between the three major subcategories (direct medical, social care, and informal
care) has not changed substantially. As reported
in 2010, direct medical care costs are modest,
accounting for roughly 20% of global dementia
costs, while direct social sector costs and informal
care costs each account for roughly 40%.
6. As country income level increases, the relative
contribution of direct social care sector costs
increases and the relative contribution of informal
care costs decreases. The relative contribution of
informal care is greatest in the African regions and
lowest in North America, Western Europe and some

South American regions, while the reverse is true for


social sector costs.
7. These new estimates should be seen as a partial
update of the previous (2010) estimates, rather than
a full-scale revision. We did not carry out a fully
systematic review of service utilisation and cost of
illness studies, but these estimates do benefit from
a fully systematic review of dementia prevalence
studies, and we have identified several important
cost of illness studies published since 2010.

CHAPTER 7

Conclusions and recommendations


1. We estimate that there are now 46.8 million people
with dementia worldwide, with numbers projected
to almost double every 20 years. There will be an
estimated 9.9 million new cases of dementia in
2015, equivalent to one every 3.2 seconds. The 2015
global societal economic cost of dementia will be
an estimated US$818bn, with huge quality of life
impacts both for individuals living with dementia and
for their families and carers.
2. In December 2013, the UK government used its
presidency of the G8 (now the G7) to launch a
Global Action Against Dementia. The outcome of
the first summit was an impressive commitment to
identifying a cure or disease-modifying therapy for
dementia by 2025. This was supported by a series
of initiatives linked to research: increase funding,
promote participation in trials, and collaborate to
share information and data.
3. Over the course of four Legacy Events, this agenda
has broadened substantially. The broader agenda
comprises five key elements: a global approach to a
global problem; the need for care now, if cure later;
a public health orientation (awareness, accessible
services, and prevention); a focus on equity
and rights; and a rational approach to research
prioritisation.
4. Earlier this year, as a final event linked to the G7
Global Action Against Dementia, the World Health
Organization convened a First WHO Ministerial
Conference on Global Action Against Dementia. The
resulting call for action identifies eight overarching
principles and eleven action points for the global
fight against dementia.
5. Alzheimers Disease International applauds the
action taken by the G7 in launching a Global Action
Against Dementia, and calls for this initiative to
be continued with a broader agenda and wider
representation from the countries and regions most
affected by the ongoing dementia epidemic. Since
92% of global dementia costs arise in the G20
countries, we advocate for a transfer of political
leadership to the full G20 group of nations.

The Global Impact of Dementia

6. Alzheimers Disease International has proposed


elements that should be part of a call for action
at global and country levels, including awareness
raising, dementia friendly communities, workforce
strategies and good quality care.
7. Dementia risk reduction should be made an
explicit priority in the general work stream on noncommunicable diseases led by the World Health
Organization, with clear linked actions including
targets and indicators.
8. Research investment for dementia should be
upscaled, proportionate to the societal cost of
the disease. This research investment should be
balanced between prevention, treatment, cure and
palliative care. A specific work stream should be
established for low and middle income countries,
involving partners from these countries to develop
programmes that raise awareness of dementia and
improve health system responses.

Alzheimers Disease International: World Alzheimer ReporT 2015

Chapter 1

Introduction

The World Alzheimer Report 2015 comprises an


overview of current knowledge regarding the evolution
of the dementia epidemic worldwide. For this purpose,
we have updated our previous estimates of the global
prevalence of dementia, and numbers affected
(previously published in the World Alzheimer Report
2009(1)), the incidence of dementia (WHO/ADI report
2012(2)), and the Global Economic Impact of Dementia
(World Alzheimer Report 2010(3)). As a new feature, we
have included a systematic review of the evidence for
and against recent trends over time in the prevalence
and incidence of dementia. We have also reviewed the
broader societal impact of dementia, compared with
that of other chronic diseases, and how this is best
measured.
The focus, as with previous reports, is upon people
aged 60 years and over. Younger onset dementia is,
thankfully, a rare condition, accounting according to
previous estimates, for some 2-8% of all cases(2;4). The
proportion may well be higher in countries in Southern
Africa with a high seroprevalence of HIV infection(2). We
did not find any new evidence to revise our previous
estimates in this area, and more research is required.
We address some of the particular needs of younger
people living with dementia in the recommendations at
the end of this report.
As with all previous reports, we have tried to provide
a global perspective throughout, with particular
attention to low and middle income countries, where

most older people, and most people with dementia


live. In the preparation of this report, one issue that
we had to address was that the distinction between
low and middle income countries and high income
countries is not static, the classification of countries
having changed significantly since 2009. This is one
aspect of the current rapid pace of global transition,
with changes in demography, health, and human and
economic development. We therefore begin the report
with a brief overview of some of the trends that are
apparent, their global distribution, and likely future
impact.

1.1 Dementia in a rapidly


changing world
The worlds older population currently comprises
nearly 900 million people. Most live in what are
currently relatively poor countries. Mortality rates
among older people are falling, and life expectancy
from age 60 continues to increase in all world regions,
with no upper limit in sight (population ageing or
the demographic transition). As people live longer,
so chronic diseases become more prevalent, a
trend exacerbated by changes towards lifestyles
and behaviours that predispose towards them. This
epidemiologic transition, linked to increases in high
fat, salt and sugar diets, sedentariness, and tobacco
use, is particularly evident in middle income countries.

The Global Impact of Dementia

With urbanisation, and economic and industrial


development, traditional societies are needing to
adapt to rapidly changing circumstances. This social
transition is less often discussed, but is as profound
in its impacts as the accompanying demographic and
epidemiologic change. This is the context in which the
coming dementia epidemic, largely concentrated in
what are now considered to be low and middle income
countries, will play out.

Table 1.1
Transitions between income categories (World Bank
Classifications 2009 and 2015)
LIC to L-MIC

L-MIC to UMIC

UMIC to HIC

14 countries

17 countries

10 countries

Bangladesh

Albania

Argentina

Ghana

Angola

Chile

Guatemala

Azerbaijan

Latvia

1.2 Economic development

Kenya

Belize

Lithuania

Kyrgyz Republic

China

Poland

Each year the World Bank publishes a revised list of


country income levels, dividing economies into four
groups according to their Gross National Income
(GNI) per capita. This index of average income is
a general indicator of development status; people
living in countries with higher GNI per capita tend to
have longer life expectancies, higher literacy rates,
better access to safe water, and lower infant mortality
rates. The four groups are low income countries (LIC),
lower middle income (L-MIC), upper middle income
(UMIC), and high income countries (HIC). The first
three of these groups (LIC, L-MIC and UMIC) are
sometimes referred to as developing economies,
or developing countries, and HIC as developed
economies/countries, although this terminology is
now considered controversial (the World Bank refers
to economies rather than countries in this report we
have used countries as a general term although some
may be considered regions or territories). In 2009 the
income thresholds were; LIC, $995 or less;L-MIC,
$996-$3,945; UMIC, $3,946-$12,195; andHIC, $12,196
or more. These thresholds are revised upwards for
inflation so that by 2015 they were LIC, $1,045 or
less; L-MIC, $1,046-4,125; UMIC $4,126-$12,735; HIC,
$12,736 or more. The transitions between income
categories provide a broad indication of the global
pace of economic development. In all, 41 countries
have achieved a higher income classification since
2009 (14 have moved from LIC to L-MIC, 17 from
L-MIC to UMIC, and 10 from UMIC to HIC). None have
moved in the reverse direction, although South Sudan,
originally part of Sudan, a L-MIC, has been reclassified
as a LIC. The overall effect therefore is that fewer
countries are now LIC or L-MIC, and more are UMIC
or HIC.

Lao PDR

Ecuador

Russia

Mauritania

Iran

Seychelles

Myanmar

Iraq

St Kitts and Nevis

Senegal

Jordan

Uruguay

Tajikistan

Maldives

Venezuela, RB

Yemen

Marshall Islands

Zambia

Mongolia

Uzbekistan

Paraguay

Vietnam

Thailand

1.3 Population ageing in a


developing world
The effect of these revisions upon the older population,
and its global distribution, is summarised in Table
1.2. In this table, we indicate the distribution of the
worlds older population in 2010, according to the 2009
World Bank classification, which was applied for that
years World Alzheimer Report. 70% of older people
were living in low or middle income countries. If the
same 2009 classification were applied to the -regional

Tonga
Tunisia
Turkmenistan

distribution of older people in 2015, then this proportion


would have increased to 71%. However, because of
upwards reclassification of 41 countries, when the
new 2015 classification is applied, the proportion living
in what are now considered low and middle income
countries (LMIC) falls to 65%. Within LMIC, there has
been a dramatic reduction in the proportion of older
people living in what are now considered to be LIC
and L-MIC, and a large increase in the proportion living
in what are considered to be UMIC. These shifts are
largely explained, given their very large population
sizes, by the transition of Bangladesh from a LIC to a
L-MIC, and of China from a L-MIC to an UMIC.
If we apply the current 2015 World Bank classification
to projections of population growth from 2015 to 2050,
we can see that the proportion living in what are now
considered LMIC will increase from 65% in 2015 to
71% in 2030 and 76% in 2050. This is explained by
more rapid population ageing in what are currently
poorer, compared with what are currently richer,
parts of the world. Through to 2050, numbers of older
people are forecast to increase by just 56% in HIC,
but by 138% in UMIC, 185% in L-MIC and by 239%
(a more than threefold increase) in LIC. Population
ageing is a crucial factor in determining the future
global distribution of the dementia epidemic, given
that age is the strongest risk determinant; more older
people means more people at higher risk of developing
the condition. Population ageing has another aspect;
while older people are living longer, fertility rates are

Alzheimers Disease International: World Alzheimer ReporT 2015

Table 1.2
The worlds population of older people (age 60 and over, millions), and their distribution according to country income level (World
Bank Classification 2009 and 2015)
Current and projected numbers of older people (% of total population)
2015

% increase over time

Year

2010

2030

2050

2015-2030

2015-2050

World Bank income


classification

2009

2009

2015

2015

2015

2015

2015

HIC

232.3 (30.4%)

258.7 (28.9%)

309.4 (34.6%)

403.9 (29.4%)

482.5 (23.9%)

31%

56%

UMIC

116.4 (15.2%)

135.3 (15.1%)

319.8 (35.7%)

531.5 (38.7%)

760.8 (37.7%)

66%

138%

L-MIC

356.2 (46.6%)

431.7 (48.2%)

233.1 (26.0%)

386.0 (28.1%)

665.3 (32.9%)

66%

185%

59.8 (7.8%)

69.5 (7.8%)

32.9 (3.7%)

53.5 (3.9%)

111.4 (5.5%)

63%

239%

1347.8 (100%)

2020.0 (100%)

51%

126%

LIC
World

764.7 (100%)

895.2 (100%)

declining in most countries. Therefore, older people


come to constitute a higher proportion of the total
population. These trends are displayed in Figure 1.1,
for the world population, and for the countries that
are currently considered LIC, L-MIC, UMIC and HIC.
In 2015, worldwide, 12.2% of the population is aged
60 years or over. This proportion is highest in HIC and
lowest in LIC; the country with the highest percentage
of older people is Japan (33.2%), and the lowest is
Uganda (3.7%). The stratification by country income
level persists to 2050, with a range from 42.7% (Japan)
to 5.1% (Mali). However, the process of population
ageing, when expressed in these terms, will be most
rapid in what are now UMIC, which will have nearly
caught up with HIC by 2050.

Figure 1.1
Percentage of the total population aged 60 years and over,
by country income level, 2015 to 2050
35
30
25
20
15
10
5
0

2015

2030

2050

LIC

5.2

6.0

8.4

L-MIC

8.1

11.2

16.3

UMIC

13.3

20.5

28.9

HIC

22.0

27.3

31.6

World

12.2

16.3

21.2

1.4 Most lower income countries


will remain relatively poor, and
face particular challenges
The projections provided above, stratified by country
income level, fail to take into account continued
economic development, which, barring catastrophes,
should see more and more countries and their
populations lifted out of poverty. Perusal of the World
Bank list of promoted countries (Table 1.1) reveals
several that have achieved this despite war, sanctions
and political and economic upheaval.
Nevertheless, we believe that it is instructive and
valid to consider the likely future evolution and impact
of the epidemic in countries that are currently LIC,
L-MIC, UMIC and HIC (see Chapter 2 on prevalence
and numbers, and Chapter 6 on economic costs).
Poorer countries evidently have fewer economic and
human professional resources to meet the health
and social care needs of their rapidly growing older
populations. These profound structural limitations are
not resolved with a few dollars increase in average
income, albeit that this may be sufficient to cross a
World Bank threshold (the current threshold for high
income country status is less than a quarter, and that
for UMIC status less than one fourteenth, of the per
capita GNI for the USA). Many face the challenge of a
double burden of persistently high rates of maternal,
childhood and infectious diseases, combined with
a growing epidemic of chronic non-communicable
diseases, including cardiovascular diseases, cancer,
diabetes and dementia. Figure 1.2 illustrates the
significant burden of chronic disease already evident
among older people living in low and middle income
countries(5). Differences in population size are adjusted
for by expressing the burden (Disability Adjusted
Life Years see Chapter 5) per 1,000 older people.
While the impact of infectious diseases is many times
greater in low and middle income countries than in
HIC, the impact of cancer is only slightly less, and that
of diabetes, chronic respiratory and cardiovascular
disease is greater.

The Global Impact of Dementia

Figure 1.2
Leading contributors to burden of disease among people
aged 60 years and over - DALYs (per 1000 population) among
people aged 60 and over, by cause and income region 5
1000

Sensory

900

Respiratory Infection

800

Digestive

700

Diabetes

600

Unintentional Injury

500

Infection

400

Mental & Neurological

300

Musculoskeletal
Chronic Respiratory

200

Cancer

100
0

Cardiovascular
High Income

Low & Middle


Income

With the demographic and health transitions come


profound social as well as economic change. Rapidly
declining fertility rates, the increased participation
of women in the labour force, urbanisation and
migration for work are all trends conspiring to reduce
the availability of traditional informal family care(6).
Even with the unprecedented benefits of double digit
annual economic growth, rapidly developing countries
in Asia and Latin America have struggled to establish
comprehensive and effective systems of social
protection for older people, guaranteeing adequate
income, and universal access to health and social
care(7-9) Overall economic growth at the national level
can conceal gross inequities in income distribution,
and it is probably fair to say that older people are often
among the least likely and the last to benefit directly.

References
1

Alzheimers Disease International. World Alzheimer Report 2009.


London: Alzheimers Disease International; 2009.

World Health Organization. Dementia: a public health priority.


Geneva: World Health Organization; 2012.

Wimo, A. and Prince M. World Alzheimer Report 2010; The Global


Economic Impact of Dementia. London: Alzheimers Disease
International; 2010.

Prince, M., Knapp, M., Guerchet, M., McCrone, P., Prina, M.,
Comas-Herrera, A., Wittenberg, R., Adelaja, B., Hu, B., King, D.,
Rehill, A., and Salimkumar, D. Dementia UK: Update. London:
Alzheimers Society; 2014.

Prince MJ, Wu F, Guo Y, Gutierrez Robledo LM, ODonnell M,


Sullivan R et al. The burden of disease in older people and
implications for health policy and practice. Lancet 2015 February
7;385(9967):549-62.

Prince M, Acosta D, Albanese E, Arizaga R, Ferri CP, Guerra M


et al. Ageing and dementia in low and middle income countriesUsing research to engage with public and policy makers. Int Rev
Psychiatry 2008 August;20(4):332-43.

Cecchini, S. and Martinez, R. Inclusive Social Protection in Latin


America: A Comprehensive, Rights-based Approach. Santiago,
Chile: United Nations; 2012.

Pozen, R. C. Tackling the Chinese Pension System. Chicago: The


Paulson Institute; 2013.

Gan, L. Income Inequality and Consumption in China. Texas


A&M University, USA and Southwestern University of Finance and
Economics, Chengdu, China; 2013.

10

Alzheimers Disease International: World Alzheimer ReporT 2015

Chapter 2

The global prevalence of dementia

2.1 Introduction
In the World Alzheimer Report 2009(1), ADI published
estimates of the global prevalence of dementia based
on a systematic review of 154 studies conducted
worldwide since 1980, with prevalence estimates
applied to United Nations population projections
through to the year 2050. We estimated that 36 million
people were living with dementia in 2010, nearly
doubling every 20 years to 66 million by 2030 and to
115 million by 2050. In 2013, for the G8 Global Action
Against Dementia summit in London, we carried out
a limited update of the numbers published in 2009
by incorporating new evidence from sub-Saharan
Africa and China(2) and recently revised United Nations
population estimates. Six years on from the last
comprehensive review the global evidence-base has
expanded considerably, and a full update is required.
As stressed throughout this chapter, any changes in
our estimates of age-specific or age-standardised
prevalence likely reflect changes in the quality and/
or quality of evidence available, and should not be
construed as implying that there has been a change
in the true underlying prevalence of dementia in the
regions concerned since 2009. However, increases in
the numbers of people affected are to be expected,
given significant increases in the size of the older
population.

This report uses essentially the same method as we


had previously used in the World Alzheimer Report
2009 (see Methods section below). We have conducted
a new, fully systematic review of the prevalence studies
conducted worldwide from 2009. Studies conducted
in China are often not available in English, as was
demonstrated in two comprehensive reviews published
in 2013(2-4). For this report, following the precedent
established by these reviews, we searched Chinese
databases to include all available evidence. The
systematic review presented in this report is therefore
both the most exhaustive and up to date review carried
out on the prevalence of dementia worldwide.

2.2 Methods
2.2.1 Search strategy
Two teams searched English and Chinese databases
separately. The English language search updated the
previous World Alzheimer Report review conducted in
2009(5), by searching for studies published from 2009
onwards, and the Chinese database search updated
Wu et al.s review conducted in 2012(2), by searching
for studies published from 2011 onwards. The following
search strategies were used.

11

The Global Impact of Dementia

English Database Search


Search date: February 2015
Databases: EMBASE, Global Health, MEDLINE,
PsychExtra and PsychInfo
Search terms: dementia AND (prevalence OR
epidemiology)
Chinese Database Search
Search date: March 2015
Databases: CNKI, Wanfang, Airti
Search terms: (/dementia OR /dementia OR
/Alzheimer) AND (/prevalence OR
/prevalence OR /epidemiology)
The Chinese search team also reappraised, for
eligibility, those Chinese language publications that
had been included in the 2009 World Alzheimer Report,
on the basis of a review published in 2007 of studies
conducted in China between 1980 and 2004(6). This
had not been possible in 2009.

2.2.2 Inclusion criteria


Population-based studies of the prevalence of
dementia among people aged 60 years and over
(according to DSM-IV or ICD-10 criteria, or similar preexisting clinical criteria), for which the field work started
on or after 1st January 1980.

2.2.3 Exclusion criteria


Base population
Studies of prevalence from the follow-up phase
(rather than the inception phase) of a population
cohort
Studies sampling from an out-of-date population
register (prepared more than three years prior to
the survey)

2.2.4 Procedures
All stages of the search were completed by two
reviewers. For the English search, all abstracts were
read by GA and by either YW or MG. Papers were
excluded at this stage only when the abstract clearly
demonstrated that the paper did not meet the above
criteria. Full texts of the remaining publications were
read by GA and by either YW or MG, and a consensus
decision was made on those that met all criteria. These
papers were published in English, French, Spanish and
Portuguese, all of which could be read by our team
using translation programmes. The Chinese search
was conducted independently by Dr Yu-Tzu Wu and Dr
Kit Yee Chan, who compared their study selection at
each stage of screening and review.
All eligible studies were systematically coded for their
study design and quality according to the following
criteria:
1 Country
2 WHO/Global Burden of Disease World Region (see
Appendix A for list of countries and regions)
3 Inclusion of residents of long term care institutions
4 Start and finish dates for fieldwork, and census
dates if provided
5 Lower and upper age limits
6 Sampling (simple random, stratified random, whole
population, other)
7 Design (one phase/two phase/three phase)
8 Overall sample size (first phase)
9 Numbers interviewed (first phase) and proportion
responding
10 For two-phase surveys only

Studies of nursing home or residential care


populations

a. Numbers selected for the second phase (for two


phase surveys)

Studies of primary care attendees or other


unrepresentative service-user populations

b. Numbers interviewed (second phase) and


proportion responding

Ascertainment/outcome definition
Studies in which the ascertainment of dementia
depended upon help-seeking and/or receipt of
dementia care services

c. Screen negatives sampled for the second phase


(yes/no)
d. Screen negatives given same assessment as
screen positives (yes/no)

Studies in which dementia was diagnosed


purely on the basis of cognitive impairment, for
example according to a cutpoint on the MMSE

e. Weighting back carried out (no weighting back/


appropriate weighting back/no weighting back,
but no false positives)

Studies of the prevalence of Alzheimers disease


or other subtypes of dementia

f. Time interval between first and second phase

Studies restricted to young-onset dementia (up


to 59 years of age)

g. Screening instrument/s
11 Diagnostic criteria (not specified, ICD, DSM, GMS/
AGECAT, CAMDEX, other clinical criteria)
12 Use of multidomain cognitive assessment,
informant interview, disability assessment,
neuroimaging

12

Alzheimers Disease International: World Alzheimer ReporT 2015

An overall quality score was derived by summing


scores for the following elements:
Sample size <500, 0.5 points; 500-1499, 1 point;
1500-2999, 1.5 points; >=3000 2 points
Design Two-phase study with no sampling of screen
negatives, 0 points; two-phase study with sampling
of screen negatives but no weighting back, 1 point;
one-phase study or two-phase study with appropriate
sampling and weighting, 2 points
Response proportion <60%, 1 point; 60-79%, 2
points; >=80%, 3 points
Diagnostic assessment one point each for
multidomain cognitive test battery, formal disability
assessment, informant interview and clinical interview

2.2.5 Data extraction


Prevalence data was extracted from the studies as
follows.
For unweighted prevalence, we extracted (according to
the data presented in the paper) either numerator and
denominator, prevalence and denominator, prevalence
and standard error, or prevalence and 95% confidence
intervals. Numerator and denominator could then be
calculated from any of these combinations.
For weighted prevalence we extracted (according
to the data presented in the paper) either weighted
prevalence and weighted standard error, or weighted
prevalence and weighted 95% confidence intervals.
Effective numerators and denominators (taking into
account the design effect) could then be calculated
from either of these combinations.
Prevalence estimates were stratified differently in
different publications. To maximise the precision of
our meta-analysis, we required prevalence estimates
in five-year age-bands, separately for men and women
(age- and gender-specific prevalence). In practice,
some studies:
a) Simply gave an overall prevalence for the whole
sample, stratified by neither age nor gender
b) Provided gender-specific estimates, not stratified by
age
c) Provided age-specific estimates, not stratified by
gender
In each of the above scenarios, we wrote to the authors
to request age- and gender-specific prevalence data.
Prevalence data in formats a) and b) could not be used
in our meta-analyses, since the main aim was to model
the effect of age on dementia prevalence. Such studies
therefore had to be excluded. Age-specific prevalence
data (c) above) could be used, and these data were
generally available or could be calculated from ageand gender-specific estimates. We could therefore
model the effect of age on dementia prevalence for all
included studies, and the effects of age and gender

for the subset of studies that had provided age- and


gender-specific estimates.

2.2.6 Meta-analytical methods for


estimating dementia prevalence within
regions
Within each GBD region where there was sufficient
data to conduct a meta-analysis, we used a random
effect exponential (Poisson) model to assess the effect
of age, and of age and gender, on the prevalence
of dementia. Random effects are assumed to have
a gamma distribution the alpha coefficient is an
estimate of over-dispersion and an index of betweenstudy heterogeneity.
Age was coded as the mean for each reported age
group. For high income countries, this was calculated
from the US Census, while for low and middle income
countries we estimated this as the mean observed
in the relevant 10/66 Dementia Research Group
population-based study(7). For SSA countries, this was
calculated from the mean observed in four populationbased studies in West and Central Africa for which
individual data was available(8-10). We ran two models
for each region: one for the effect of age, and one for
the effects of age, gender, and an interaction between
age and gender. We then applied the relevant mean
ages and gender codings to the coefficients estimated
by the models, producing age- and gender-specific
prevalence estimates in five year age-bands from 6089 years, and for those aged 90 and over.

2.3 Results
2.3.1 The extent of the evidence-base
The initial searches yielded 8,736 English abstracts
and 1,941 Chinese abstracts (a total of 10,677 unique
hits). Through screening the titles and abstracts,
10,483 publications were excluded as clearly ineligible,
leaving 194 publications for further review (160 from
the English abstract search and 34 from the Chinese
search). We obtained full texts of all the full published
papers, which were then carefully assessed against
inclusion/exclusion criteria. A further 129 publications
were excluded at this stage, leaving 65 publications
that were provisionally eligible for inclusion. For 10 of
these publications, we could not include the data in the
form in which it was provided in the publication, and
authors did not respond to requests for age-stratified
data. These publications were coded pending,
awaiting clarification from authors. Finally, 55 new
publications (included in neither the 2009 World
Alzheimer Report, nor the Wu et al. 2013 review) were
fully eligible for inclusion in the meta-analysis. The
Chinese database search identified 10 new studies
from China, and one from Taiwan, published since Wu
et al.s 2013 review. Three recent English language
publications describing China studies were identified
from the English database search. Four studies from

13

The Global Impact of Dementia

the 2007 review(6) used for the 2009 report were


found not to meet our inclusion criteria. However, an
additional 28 publications identified in Wu et al.'s 2013
review(2) would have been eligible for inclusion in the
2009 review, had they been identified at that time.
All in all, we identified 86 eligible publications for the
East Asia region (72 from the Wu et al. review, and 14
from the updated searches), referring to 89 studies.
78 of these provided data in the form that could be
used for the meta-analysis (we were unable to source
age-stratified prevalence estimates for 6 studies, and a
further 5 provided age-stratified prevalence estimates
without information from which we could backcalculate number of cases and denominator).
Combining the new studies with the results of the
original systematic reviews(2, 5), we were left with 273

studies potentially eligible for inclusion in the metaanalysis, with 224 in the required data format to be
included. For a complete list of studies included in
and excluded from the meta-analysis, see the online
appendix at www.alz.co.uk/research/world-report-2015

2.3.2 The coverage of the evidence-base


The number of studies identified in each GBD world
region, and the number of older participants studied
are listed in Table 2.1.
Good to reasonable coverage was identified for 12
of the 21 GBD regions. Three regions East Asia (89
studies), Western Europe (71 studies) and Asia Pacific
High Income (30 studies) account for the majority of
the worlds studies. The next best represented regions
are North America (16 studies) and Latin America

Table 2.1
Coverage, by region, with respect to size of elderly population
Region

ASIA

Over 60 year
old population
(millions)

Number of
eligible dementia
prevalence studies
(additional studies
since WAR 2009)

Number of
studies/
10 million
population

Total
population
studied

Total population studied/


million population

485.83

144 (71)

3.0

420143

865

Australasia

5.80

4 (0)

6.9

2223

383

Asia Pacific, High


Income

52.21

30 (8)

5.7

46843

897

Asia, Central

7.43

0 (0)

0.0

Asia, East

218.18

89 (55)

4.1

342231

1569

Asia, South

139.85

14 (7)

1.0

19673

141

Asia, Southeast

61.72

6 (1)

1.0

7144

116

Oceania

0.64

1 (0)

15.6

2029

3170

EUROPE

176.61

78 (17)

4.4

106909

605

Europe, Western

107.89

71 (15)

6.6

104447

968

Europe, Central

26.92

6 (2)

2.2

2462

91

Europe, Eastern

41.80

1 (0)

0.2

Not available

Could not be calculated

THE AMERICAS

145.51

34 (6)

2.3

94875

643

North America

74.88

15 (2)

2.0

42361

548

Caribbean

5.78

5 (1)

8.7

24625

4260

LA, Andean

5.51

3 (0)

5.4

3465

629

LA, Central

24.64

6 (2)

2.4

12665

514

LA, Southern

9.88

1 (0)

1.0

4689

475

LA, Tropical

24.82

4 (1)

1.6

7070

285

AFRICA

87.19

17 (12)

1.9

18126

208

North Africa/ Middle


East

38.93

6 (4)

1.5

8371

215

SSA, Central

4.78

4 (4)

8.4

3020

632

SSA, East

19.86

1 (1)

0.5

1198

60

SSA, Southern

6.06

1 (0)

1.7

150

25

SSA, West

17.56

5 (3)

2.8

5387

307

WORLD

895.14

273 (106)

3.0

640053

715

14

Alzheimers Disease International: World Alzheimer ReporT 2015

in the USA(11) (but on a very small sample), Canada(12),


Mexico(13), Korea(14) and Singapore(15). The MRC CFAS
study in the UK(16) provides good coverage of different
regions and urban and rural populations, but is not
nationally representative. By the same token, studies
carried out in just one or two countries may not safely
be generalised to a large number of other countries in
the same GBD region. For example, the Caribbeans
evidence base derives from three studies in Cuba, one
in Jamaica, and one in the Dominican Republic. The
remaining 24 Caribbean countries include some of
the worlds poorest (Haiti) and richest (The Bahamas).
They also differ markedly due to different colonial
histories. Limits to generalisability are particularly
significant when the few available studies are small,
were conducted some time ago, and/or are of poor
methodological quality. All of these limitations apply,
for example, to the one study identified in Southern
sub-Saharan Africa(17).

if considered as a single region (14 studies). Other


regions with reasonable coverage are South Asia (14
studies), Southeast Asia (6 studies) and Australasia (4
studies). Sparse coverage only was achieved in three
regions: Central Europe (5 studies), and Eastern and
Southern sub-Saharan Africa (1 study each). No eligible
studies were identified for Central Asia.
The participants per million older population (Table
2.1) provides an index of the research effort relative to
the size and probable diversity of the countries and
regions concerned. According to these criteria, broadly
similar coverage was achieved in the Asia Pacific, East
Asia, Western Europe, North America, Latin America
and Caribbean regions. There was a higher density
of studies in Western Europe, but these tended to be
smaller in size than those in North America and East
Asia. The greatest improvements in coverage since our
2009 review have been seen in Central and Western
sub-Saharan Africa, where coverage has improved
from sparse to reasonable. Apart from the region with
no studies (Central Asia), the regions that stand out as
persistently lacking in research relative to population
size are Central Europe, and Eastern and Southern
sub-Saharan Africa. Despite reasonable coverage in
terms of numbers of studies in South and Southeast
Asia, these are still sparse with respect to population
size.

When the 10/66 Dementia Research Group was


founded in 1998, the groups name (10/66) referred to
the 10% of population-based research that had been
conducted in low and middle income countries (LMIC),
relative to the two-thirds of people with dementia
living in those regions. By 2009, the situation had been
transformed 65 of the 167 dementia prevalence
studies (39%) had been conducted in LMIC. With
the additional evidence unearthed from China, and
the recent preponderance of studies from LMIC, the
updated proportion for studies conducted through
to 2015 is 52%. Of more concern is the finding that
studies in high income countries peaked in the early
1990s and declined sharply thereafter. This trend,
noted in our 2009 report, has continued. From 19801994, 35% of all studies were conducted in LMIC,

Adequate coverage of large and populous countries


such as the USA or China would require a large
number of studies in different regions encompassing
the racial, cultural, economic and social diversity of
the nation as a whole. This has been achieved for
China(3). The most informative approach would be a
study of a nationally representative sample, but to our
knowledge such studies have only been carried out

Figure 2.1
Numbers of prevalence studies, by year of data collection and income level of the country where the research was carried out
18
Low and Middle Income Countries

16

High Income Countries

14
12
10
8
6
4

2013

2012

2011

2010

2009

2008

2007

2006

2005

2004

2003

2002

2001

2000

1999

1998

1997

1996

1995

1994

1993

1992

1991

1990

1989

1988

1987

1986

1985

1984

1983

1982

1981

1980

15

The Global Impact of Dementia

compared with 69% from 1995-2004 and 76% from


2005 onwards. This has an impact, also on the recency
of the evidence-base; in HIC 45% of all studies were
conducted post-1995, compared with 76% of available
studies from LMIC.

2.3.3 The quality of the research


The principal characteristics of the included studies are
described in Table 2.2, by world region.

2.3.3.1 Study design


The major quality control issue concerns the use of
surveys with two or more phases. Multiphase survey
designs are popular in dementia research because of
perceived efficiencies in interviewer time and cost. A
fundamental and common error is to fail to submit a
random sample of those scoring above the pre-defined
cutpoint on the first phase screening assessment
(screen-negatives) to the same diagnostic
assessment as screen-positives. No screening
assessment is perfectly sensitive, and it is therefore
likely that some cases of dementia will be missed in
phase one. The correct procedure is to estimate the
false positive rate among the screen negatives and
then weight back, calculating an overall prevalence
that accounts for the different sampling proportions of
screen positives and screen negatives. Unfortunately,
most investigators using a multiphase design did not
sample screen negatives, and those that did often did
not weight back appropriately. 77% of the dementia
prevalence studies included in our meta-analysis used
a multiphase design, yet only 17% of these correctly
applied the design and appropriately analysed the
results. This problem therefore affects 64% of all
studies. Failure to include a sample of negative screens
and weight back accordingly will produce results that
tend towards an under-estimation of true dementia
prevalence and an over-estimation of precision. Even
when applied correctly, multiphase studies are often
complicated by the relatively high levels of loss to
follow-up that occur between screening and definitive
diagnostic assessment(18); this is again likely to lead
to bias, which could over- or under-estimate true
prevalence(19). Of the studies conducted in the last ten
years (since 2005), 78% used a multiphase design and
of these only 11% applied it correctly. In this respect,
study quality has clearly not improved since our 2009
meta-analysis.

2.3.3.2 Scope of definitive diagnostic


assessment
Dementia diagnosis requires demonstration of
cognitive impairment (and decline from a previous
level of functioning) in memory and other domains of
intellectual function, and demonstration of consequent
social or occupational impairment. Other causes of
cognitive and functional impairment, such as functional
psychosis, depression and delirium, should be

excluded. A diagnostic assessment should therefore


include multi-domain cognitive testing, disability
assessment, a clinical interview and an informant
interview. Overall, only 34% of all included studies
fully met this requirement. Informant interviews were
the most commonly missed element. The effect of
applying a less thorough diagnostic assessment
of dementia prevalence is uncertain. In principle it
could lead to either under- or over-estimation of true
prevalence. Looking only at studies conducted since
2005, the proportion with a comprehensive diagnostic
assessment rises to 52%. Study quality in this respect
does appear to be improving, although the informant
interview is still too often missing.

2.3.3.3 Sample size


Over half (52%) of all eligible studies had sample sizes
smaller than 1500, and this figure rises slightly to 54%
when considering studies conducted since 2005.
Nearly a third of Western European studies had sample
sizes smaller than 500, though of the recent studies
this falls to less than a quarter. East Asia (China,
Hong Kong and Taiwan) contributed a relatively high
proportion of the large studies sampling over 3000
people. Sample sizes tended to be larger in studies
conducted in LMIC. In principle, sample size should
not have any consistent effect on prevalence, although
larger studies will estimate prevalence with greater
precision. A study of 500 participants could estimate
a true prevalence of 6% with a precision of +/- 2.1%.
Precision increases to +/- 1.2% for a sample size of
1500 and to +/- 0.8% for a sample size

2.3.3.4 Response proportion


Those who cannot be contacted or do not consent to
take part in a survey may have different characteristics
from those included in the final sample. People with
dementia may be under-represented in the interviewed
sample, due to relatives being reluctant for them to
participate or because those that consent to participate
find it more difficult to complete the questionnaires.
Alternatively, they may be over-represented due
to an increased likelihood of people with dementia
being at home when interviewers call. The direction
of the bias is hard to predict, but studies with higher
proportions of participants responding should provide
more accurate prevalence estimates. Participation
rates in the studies included in our meta-analysis
were generally adequate to good; only 13 studies
(5%) reported fewer than 60% of eligible participants
responding, while more than half (58%) reported 80%
or more responding. Response proportions seem to
be slightly higher for studies carried out since 2005.
However, in some studies conducted in high income
countries, response proportions have declined over
time(20).

16

Alzheimers Disease International: World Alzheimer ReporT 2015

17

The Global Impact of Dementia

Table 2.2
Study characteristics, by region and by country income level
Western
Europe

Central Europe

North America

Latin America
and Caribbean

Asia Pacific
High Income

Austral-asia

Asia, East

Asia, South

Asia, South
East

Sub-Saharan
Africa

HIC

LMIC

All regions

65

14

18

24

82

11

117

130

247

1980-1989

13 (20%)

3 (21%)

7 (29%)

2 (50%)

4 (5%)

2 (19%)

1 (17%)

25 (21%)

7 (5%)

32 (13%)

1990-1999

37 (57%)

1 (25%)

9 (64%)

3 (16%)

10 (42%)

1 (25%)

36 (44%)

4 (36%)

2 (33%)

1 (11%)

64 (55%)

43 (33%)

107 (43%)

2000-09

10 (15%)

2 (50%)

2 (14%)

13 (72%)

6 (25%)

1 (25%)

24 (29%)

7 (64%)

3 (50%)

4 (45%)

21 (18%)

56 (43%)

77 (31%)

2010 onwards

3 (5%)

1 (6%)

1 (4%)

12 (15%)

3 (33%)

5 (4%)

15 (12%)

20 (8%)

Not specified

2 (3%)

1 (25%)

1 (6%)

6 (7%)

1 (11%)

2 (2%)

9 (7%)

11 (5%)

<500

20 (31%)

1 (25%)

1 (6%)

3 (13%)

2 (50%)

10 (12%)

2 (19%)

1 (17%)

1 (11%)

28 (24%)

15 (12%)

43 (17%)

500-1499

25 (38%)

3 (75%)

4 (28%)

6 (35%)

8 (35%)

2 (50%)

21 (26%)

4 (36%)

4 (66%)

7 (78%)

43 (37%)

43 (33%)

87 (35%)

1500-2999

11 (17%)

5 (36%)

8 (47%)

7 (30%)

33 (40%)

4 (36%)

1 (17%)

1 (11%)

25 (21%)

51 (39%)

75 (30%)

>=3000

9 (14%)

5 (36 %)

2 (12%)

5 (22%)

18 (22%)

1 (9%)

21 (18%)

21 (16%)

42 (17%)

1 (1%)

1 (25%)

1 (7%)

1 (4%)

5 (6%)

2 (18%)

1 (11%)

5 (4%)

9 (7%)

14 (6%)

DSM-IV/ III-R

48 (74%)

2 (50%)

9 (64%)

11 (61%)

21 (88%)

3 (75%)

63 (77%)

6 (55%)

4 (67%)

7 (78%)

87 (74%)

93 (72%)

180 (73%)

GMS/ AGECAT

3 (5%)

1 (7%)

2 (2%)

2 (33%)

4 (3%)

4 (4%)

8 (3%)

CAMDEX

7 (11%)

1 (25%)

8 (7%)

1 (1%)

9 (4%)

Other

6 (9%)

3 (21%)

7 (39%)

2 (8%)

1 (25%)

12 (15%)

3 (27%)

1 (11%)

13 (11%)

23 (18%)

36 (15%)

1 phase

21 (32%)

1 (25%)

2 (14%)

10 (56%)

4 (17%)

3 (75%)

9 (11%)

3 (27%)

1 (17%)

2 (22%)

32 (27%)

25 (19%)

57 (23%)

2+ phases

44 (68%)

3 (75%)

12 (86%)

8 (44%)

20 (83%)

1 (25%)

73 (89%)

8 (73%)

5 (83%)

7 (78%)

85 (73%)

105 (81%)

190 (77%)

20%

33%

50%

38%

15%

100%

5%

0%

0%

40%

24%

12%

17%

<60%

8 (12%)

1 (25%)

1 (7%)

1 (1%)

11 (9%)

2 (2%)

13 (5%)

60-79%

26 (40%)

1 (25%)

6 (43%)

3 (17%)

5 (21%)

2 (50%)

10 (12%)

2 (18%)

1 (17%)

1 (11%)

42 (36%)

18 (14%)

59 (24%)

80-100%

29 (45%)

2 (50%)

5 (36%)

12 (66%)

12 (50%)

2 (50%)

58 (71%)

7 (64%)

2 (33%)

8 (89%)

52 (44%)

89 (69%)

142 (58%)

3 (5%)

2 (14%)

3 (17%)

7 (29%)

13 (16%)

2 (18%)

3 (50%)

12 (10%)

21 (16%)

33 (13%)

37 (57%)

6 (43%)

13 (72%)

5 (21%)

12 (15%)

5 (45%)

1 (17%)

9 (100%)

50 (43%)

35 (27%)

84 (34%)

8.1 (1.7)

6.4 (2.1)

8.3 (1.6)

9.5 (1.8)

7.0 (1.6)

8.3 (0.9)

6.2 (1.8)

8.2 (1.8)

6.0 (0.9)

9.0 (0.8)

7.8 (1.7)

7.1 (2.3)

7.4 (2.0)

Total number of studies1


Year of Research

Sample size

Outcome
ICD-10

Design

Multiphase design applied


and analysed correctly2
Response Proportion

Not specified
Assessment Quality
Comprehensive diagnostic
assessment 3
Overall Quality Score 4
Mean (SD)

1 These numbers differ from the totals listed in Table 2.1, as we


were not able to ascertain some or all study characteristics for
some of the pending studies, about which we were seeking
further information from authors.

2 As a proportion of all studies using a multiphase design (i.e. with two or
more phases, with screening performed on all in the first phase,
and definitive diagnostic assessment on a sub-sample based on
screening score)

3 Defined as a multi-domain cognitive battery, an informant


interview, a formal assessment of disability, and a clinical
interview

4 Derived from sample size, design, response proportion


and assessment quality (see text for details)

18

Alzheimers Disease International: World Alzheimer ReporT 2015

2.3.3.5 Overall quality


Mean scores for our quality index varied significantly
between regions. Overall study quality was especially
high in Latin America and sub-Saharan Africa, and
particularly poor in East Asia, Southeast Asia, Central
Europe and the Asia Pacific High Income regions.
Study quality did not differ significantly between high
income and low/middle income countries. Despite lack
of progress regarding appropriate use of multiphase
design, there remains a pronounced tendency for
overall study quality to have improved over time.

2.3.4 Meta-analysis of dementia


prevalence within GBD regions
We considered the evidence-base to be sufficient
in terms of coverage and the number and quality
of studies to conduct meta-analyses for 16 of the
21 GBD regions: Western Europe, Central Europe,
North America, Latin America (combining the Latin
American Andean, Central, Southern and Tropical
regions), Asia Pacific High Income, Australasia, East
Asia, Southeast Asia, South Asia and sub-Saharan
Africa (combining the central, southern, eastern and
western sub-Saharan regions). This is five more regions
than we were able to meta-analyse in 2009, due to
increased evidence from Central Europe and evidence
considered generalisable to all four of the regions
comprising sub-Saharan Africa. Because the North
American region included just two countries (Canada
and the USA) and because Canada was represented
by a large and well-conducted survey on a nationally
representative sample(3), we used a slightly different
approach for this region. We meta-analysed studies
conducted in the US to generate estimates for the
USA only, and applied the Canadian Study of Health
and Aging (CSHA) prevalence findings to Canada.
A summary of which countries are included in each
region, the countries for which prevalence studies have
been conducted, and the approach used to generate
regional prevalence and numbers can be found in
Appendix A.

2.3.4.1 The effects of age and gender


In fitting the models, we noted a strong effect of age
in each region. The prevalence of dementia increased
exponentially with age, doubling with every 5.5 year
increment in age in North America, 5.7 years in Asia
Pacific, 5.9 years in Latin America and, with every 6.3
year increment in East Asia, every 6.5 years in West
and Central Europe, every 6.6 year increment in South
Asia, and every 6.9 years in Australasia, 7.2 years
in the Caribbean and SSA, and 10.6 years in South
East Asia. We also noted an independent effect of
gender in some regions: East Asia, Asia South, the
Caribbean, Western Europe and Latin America, where
the predicted prevalence for men was between 14%
and 32% lower than that for women. This effect wasnt
significant for the other regions. An interaction was

noted between age and gender, with a tendency in all


regions for the divergence in prevalence between men
and women to rise with increasing age; however, this
was statistically significant only for the Asia Pacific and
Latin America regions.

2.3.4.2 Heterogeneity of prevalence


within regions
There was statistically significant overdispersion in
all of the models other than that for Australasia and
Europe Central, indicating significant heterogeneity in
age-specific or age- and gender-specific prevalence
between studies, within regions. Heterogeneity
was most marked for South Asia (alpha=0.37), East
Asia (alpha=0.20) and Western Europe (alpha=0.16).
Heterogeneity in all regions was quite similar to that
which was observed in 2009.
An advantage of modelling prevalence with Poisson
random effects exponential regression is that it allows
us to explore possible sources of heterogeneity
between study estimates. With the new data available
from China, we are now able to carry out these
meta-regressions for two world regions; East Asia, in
addition to Western Europe. Given that limited data is
available for some design and methodological factors
from the Chinese studies, we limited the analyses
to the effects of one or two phase design (correctly
or incorrectly applied), whether or not an informant
interview was included, the year in which the survey
was carried out, and the country. All regressions were
controlled for age in the first stage. The results are
summarised in Table 2.3.

19

The Global Impact of Dementia

Table 2.3
Modelling the effects of study characteristics upon observed
prevalence in East Asia (73 studies) and western Europe
(63 studies)*
Study
characteristics

East Asia (73


studies)

Europe (63
studies)

One phase survey

1 (ref)

1 (ref)

Two phase survey


correctly applied

0.84 (0.39-1.79)

1.20 (0.84-1.72)

Two phase survey


incorrectly applied

1.02 (0.66-1.56)

1.16 (0.85-1.58)

Informant interview
not applied

0.84 (0.63-1.11)

0.98 (0.80-1.19)

1980 1994

1 (ref)

1 (ref)

1995 2005

1.79 (1.26-2.53)

0.86 (0.69-1.08)

2005

2.32 (1.62-3.32)

0.94 (0.71-1.24)

Design

Year

Alpha

0.29 (0.21-0.40)

0.09 (0.06-0.13)

* controlling for other variables in the table, and for country

The most striking finding was a marked trend for


a higher prevalence to be recorded in more recent
studies in East Asia, an effect which was not evident in
Western Europe. When the effect of year of survey was
examined as a linear variable (per year) the trend was
clearly apparent for East Asia (RR 1.041, 95% CI: 1.0201.062) but, again, not for Western Europe (RR 0.996,
95% CI: 0.981-1.012). There appeared to be no effect
of study design or methodological factors in either
region. However, when additional factors were tested
in Western Europe, prevalence was higher for those
studies that had excluded long term care institutions
from sampling (RR 1.66, 95% CI: 1.02-2.71), lower when
a multi-domain cognitive test battery had not been
applied (RR 0.51, 95% CI: 0.39-0.67), but with no effect
of the absence of a structured disability assessment
(RR 1.22, 95% CI: 0.79-1.90). Inspection of the alpha
coefficient, as an index of residual variance at different
stages of the model, confirmed that study year was
the major source of heterogeneity for East Asia, and
country for Western Europe (Table 2.4).
In East Asia, there was no significant variation by
country; compared with Taiwan, the prevalence ratios
were; China (PR 1.31, 95% CI: 0.80-2.17) and Hong
Kong (PR 1.31, 95% CI: 0.26-6.52). These comparisons
were evidently underpowered due to the relatively
small number of studies from Taiwan and Hong Kong.
For Western Europe, as noted in the 2009 World
Alzheimer Report, Israel was a clear outlier with a
substantially and significantly higher prevalence than
that noted in almost all other countries. Excluding
Israel, heterogeneity between countries is reduced, but
still present, with no clear interpretable pattern (Table
2.5). With reference to Italy (the country with the largest

number of studies), prevalence is higher in France, and


lower in Finland, San Marino and the United Kingdom.
Table 2.4
Coefficient alpha, as an index of residual between study
variability in dementia prevalence
Model
Age only
+ methodology
+ study year
+ country
+ country
(excluding Israel)

East Asia
meta-analysis
0.38
0.36
0.30
0.30
N/A

Western Europe
meta-analysis
0.15
0.14
0.14
0.09
0.07

Table 2.5
The effect of country on dementia prevalence (Western
Europe, excluding Israel) 61 studies
Country
Italy

Prevalence ratio
1 (ref)

France

1.93 (1.09-3.42)

Netherlands

0.76 (0.53-1.09)

Sweden

0.78 (0.55-1.10)

Germany

1.01 (0.66-1.57)

Finland

0.55 (0.30-1.00)

Denmark

0.88 (0.57-1.35)

Spain

1.02 (0.81-1.29)

Belgium

1.28 (0.83-1.96)

Norway

1.04 (0.59-1.84)

San Marino

0.66 (0.34-1.29)

United Kingdom

0.68 (0.51-0.93)

Switzerland

0.95 (0.48-1.86)

Portugal

0.94 (0.48-1.85)

2.3.5 Generating prevalence estimates


As described earlier, we generated both age-specific
and age- and gender-specific meta-analysed dementia
prevalence estimates for each region. For the East
Asia region, given the prominent temporal trend for
estimated prevalence observed in our meta-regression
analysis, we restricted the meta-analysis of prevalence
to studies conducted in China from 2005 onwards
and included all the other studies from the region.
The origins of the temporal trend have been debated,
specifically whether or not it reflects a true change
in underlying prevalence over time, or alternatively
merely an artefact of a shift towards the use of more
current dementia diagnostic criteria(21, 22). Regardless,
this decision seemed justified as likely to represent
the most accurate estimation of current prevalence in
the region (see Discussion, and Chapter 5 for further
details). We prioritised the age- and gender-specific
estimates where these had been provided for a large
proportion of all studies, since these should in principle
provide the most precise overall prediction of regional

20

Alzheimers Disease International: World Alzheimer ReporT 2015

Table 2.6
Meta-analysed estimates of dementia prevalence, generated from Poisson random effects models, by GBD region
Global
Burden of
Disease
Region

Number of Included Studies


Number in
age-specific
metaanalysis

Number in
age- and
genderspecific
metaanalysis

Australasia

Asia Pacific,
High Income

17

11

Gender

Age group
6064

6569

7074

7579

8084

8589

90+

Standardised
prevalence
for those aged
60+

All

1.8

2.8

4.5

7.5

12.5

20.3

38.3

6.91*

1.5

2.3

3.8

6.5

11.2

18.4

35.7

6.54*

1.0

1.8

3.3

6.3

12.1

22.5

50.6

All

1.0

1.9

3.3

6.0

11.0

19.6

41.8

5.96

1.2

1.9

3.0

5.1

8.6

14.2

27.2

6.19

1.5

2.5

4.2

7.3

12.8

21.6

43.0

All

1.5

2.4

4.0

7.0

12.1

20.3

40.5

6.61*

1.2

1.9

3.0

5.1

8.5

13.8

26.2

5.63*

1.6

2.5

4.0

6.7

11.2

18.1

34.3

All

1.9

3.0

4.9

8.3

14.0

23.0

44.1

7.70

1.8

2.6

3.9

6.2

9.8

15.0

26.4

7.64

1.8

3.0

5.1

9.0

16.0

27.2

54.9

All

3.3

4.4

6.0

8.3

11.5

15.6

23.5

7.15*

1.1

1.8

2.8

4.7

7.8

12.6

23.7

6.67*

2.0

3.2

5.2

8.7

14.6

23.7

45.1

All

1.6

2.6

4.3

7.3

12.4

20.5

39.8

6.80

1.6

2.3

3.3

4.9

7.3

10.6

17.3

5.18

1.8

2.6

4.0

6.3

10.0

15.4

27.1

All

1.1

1.8

2.9

5.0

8.5

14.0

27.1

4.65*

1.3

2.1

3.7

6.8

12.3

21.6

45.2

6.77*

1.0

1.8

3.3

6.4

12.5

23.2

52.7

All

1.0

1.7

3.0

5.7

10.6

19.1

41.6

5.73

1.4

2.4

4.3

7.4

12.6

21.6

43.7

8.41*

1.3

2.5

4.7

8.9

16.5

30.7

69.4

All

1.5

2.6

4.8

8.6

15.2

27.0

57.5

8.34

1.0

1.5

2.3

3.8

5.7

9.2

17.5

*5.47

2.0

3.0

4.6

7.5

11.5

18.6

35.8

All

1.3

2.0

3.1

5.1

8.0

13.1

25.7

ASIA

Asia, East

44

15

(2005-15
only for
China)
Asia, South

Asia,
Southeast

11

EUROPE
Europe,
Western

Europe,
Central

65

54

THE AMERICAS
North
America
(USA only)
Latin
America

10

13

AFRICA
SubSaharan
Africa

Standardised using Western Europe as the standard population


* These estimates were used to generate the numbers of people with dementia

4.63

21

The Global Impact of Dementia

prevalence. Age-specific estimates had to be used for


Australasia, East Asia, Southeast Asia, and Central
Europe. To facilitate comparison between regions
and with previous estimates for the same regions,
we calculated overall standardised prevalence for all
those aged 60 and above, using Western Europe as the
standard population(23).

2.3.6 Generation of prevalence estimates


for other GBD regions where it was not
possible to conduct a meta-analysis
When a lack of available data for a region prevented
us from conducting a meta-analysis, our default
option was to apply the relevant estimates from the
Lancet/ADI Delphi consensus conducted in 2005,
representing the best available estimates of likely
dementia prevalence in those regions(24). This process
was no longer necessary for Central Europe or the
sub-Saharan Africa regions, for which meta-analyses
were conducted as part of this update. Lancet/ADI
Delphi consensus estimates were therefore only
applied to Central Asia, Oceania, Eastern Europe, the
Caribbean and North Africa/Middle East. This was
complicated by the mismatch between the 14 WHO
world regions (based on geography and patterns of
mortality) and the 21 new WHO GBD regions (based
on geography alone). Using the same general strategy
as for the 2009 World Alzheimer Report, we therefore
applied the relevant ADI/Lancet regional age-specific
estimates to each country in the GBD region, and
then aggregated prevalence as a weighted average
across the region. For some countries, we felt that
recent good quality studies arguably provided better
estimates for that country (and in some instances for
some of its neighbours) than the ADI/Lancet regional

estimate. This applied to the following GBD regions


and countries:
Caribbean Cuba(7, 25, 26), Dominican Republic(7) and
Puerto Rico(27)
North Africa/Middle East Egypt(28-30) (applied to
Egypt, and three other EMRO D countries - Iraq,
Morocco and Yemen, and Algeria (AFRO D), Turkey(3133) (applied to Turkey)
The age-specific aggregated dementia prevalence
estimates for each region are provided in Table 2.5. To
facilitate comparison between regions, we have again
calculated overall age- and age- and gender-specific
standardised prevalence for all those aged 60 and over,
using Western Europe as the standard population.

2.3.7 Final summary of estimated


prevalence
Estimated prevalence for all those aged 60 years and
over, standardised to the Western European population
structure, can be compared directly between the 21
GBD regions and between our 2009 and updated
estimates (Figure 2.3). The highest standardised
prevalences were those in North Africa/Middle East
(8.7%) and Latin America (8.4%), and the lowest in
Central Europe (4.7%). The other regions occupied
a fairly narrow band of prevalence, ranging between
roughly 5.6% and 7.6%. When compared with the
results of our 2009 systematic review and metaanalysis (age, or age and gender standardised to the
same Western European population) the estimates
for most regions remain broadly similar. This is not
surprising given the relatively small number of new
studies for most regions. However, the evidence base
has expanded significantly for the East Asia, sub-

Table 2.7
Estimates of dementia prevalence (%) for GBD regions where it was not possible to carry out a quantitative meta-analysis
Sources of prevalence
data used to calculate
regional weighted
average

60-64

65-69

70-74

75-79

80-84

85+

Age-standardised
prevalence
For all those aged
60 years and over

ASIA
Asia, Central

EURO B, EURO C

0.9

1.3

3.2

5.8

12.1

24.7

5.75

Oceania

WPRO B

0.6

1.8

3.7

7.0

14.4

26.2

6.46

EURO C

0.9

1.3

3.2

5.8

11.8

24.5

5.70

AMRO B, AMRO D,
Cuba(7, 25), Dominican
Republic(7), Puerto
Rico(27)

1.6

2.9

4.4

8.5

14.3

30.7

7.58

EMRO B, Egypt(28-30),
Turkey(31-33)

2.2

3.6

6.0

9.7

16.4

29.4

8.67

EUROPE
Europe, Eastern
THE AMERICAS
Caribbean

AFRICA
North Africa / Middle
East

22

Alzheimers Disease International: World Alzheimer ReporT 2015

Figure 2.3
Estimated prevalence of dementia for those aged 60 and over, standardised to Western Europe population, by GBD region
10

2009 Estimate

2015 Estimate

Standardised prevalence

7
6
5
4
3
2
1

2.3.8 Estimation of numbers of people


with dementia
Having applied the age-specific, or age- and genderspecific prevalence estimates to the UN population
projections (see method section for details), we
estimate that 46.8 million people worldwide are
living with dementia in 2015 (Table 2.6 and Figure
2.4). This number will almost double every 20 years, to
74.7 million in 2030 and 131.5 million in 2050. These
new estimates are 12-13% higher than those made for

t
W
es

ric

a,

Af
n
ra

n
Su

b-

Sa

ha

ra
ha

Sa

a,

So

Ea

ric
Af

Af
n
ra

ha
Su

b-

Sa

ut

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a,
ric

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a,
ric

Af
n
Su

b-

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ha

Sa
bSu

tra
en

Ea
e
dl

id
/M

a
ric

Af
th
or
N

Saharan Africa, and North Africa/Middle East regions,


and review of the additional evidence has resulted, in
each case, in a revision upwards of previous estimates.
It should be stressed that this should not be taken
to indicate a trend towards an increasing prevalence
over time. For China, many of the new studies were
conducted pre-2009 but were not available for the
previous review, which excluded Chinese language
publications. For North Africa/Middle East, evidence
from studies has replaced the opinion of the ADI/
Lancet Delphi expert consensus panel(24) for several of
the more populous countries in the region. Even where
more recent studies do record a higher prevalence,
as previously highlighted, factors other than temporal
trends may account for the more recent studies having
recorded higher prevalences.

st

a
ic
er

Am

tin
La

ar

ib

er

be

ic

an

t
Am

or

th

pe
ro
Eu

Eu

ro

pe

,C

en

,E

as

tra

rn
te

st
ea

,W
es

th
Eu

ro

pe

ou
,S
ia

As

As

ia

,S

ou

as

th

,E
ia
As

,C

en

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ia
an

ia

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Pa

ia
As

Au

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fic

the World Alzheimer Report 2009 (41.5m in 2015, 65.7m


in 2030 and 115.4m in 2050).
Much of the currently projected increase through
to 2050 is attributable to increases in the numbers
of people with dementia in low and middle income
countries (LMIC). In 2009 we estimated that 58%
of all people with dementia lived in LMIC, rising to
63% in 2030 and 71% in 2050. Since then the World
Bank classification of income-level has changed for
several countries. If we apply the 2009 World Bank
classification, in 2015 64% of all people with dementia
are living in countries which were considered LMIC in
2009, and this proportion would rise to 67% in 2030
and 72% in 2050. According to the current World Bank
classification (Figure 2.4) in 2015, 58% of all people
with dementia live in LMIC, rising to 63% in 2030
and 68% in 2050.
The change of World Bank income classification for
some of the countries (see details in Chapter 1) has had
a relatively small impact on the repartition of people
with dementia between LMIC and HIC as most of the
changes occurred between the three LMIC groups
(upper middle income, lower middle income and
low income). The numbers and proportion of people
with dementia living in what are now considered low
income countries has reduced accordingly. The overall
pattern reported in 2009, of a greater relative growth
in numbers in less compared with more developed

23

The Global Impact of Dementia

Figure 2.4
The growth in numbers of people with dementia (millions) in high income (HIC) and low and middle income countries (LMIC)
150

100

50

66.45

56.16

46.74

89.28

77.63

27.28
19.50

32.30

38.72

21.97

24.73

27.95

31.72

35.71

39.14

42.18

2015

2020

2025

2030

2035

2040

2045

2050

High Income

Low and Middle Income

Table 2.8
Numbers of people with dementia (millions) according to the 2015 World Bank income classification
World Bank Income Group

Number of People with Dementia (millions)


2015

2020

2025

2030

2035

2040

2045

2050

Low Income

1.19

1.42

1.68

2.00

2.41

2.90

3.55

4.35

Lower Middle Income

9.77

11.52

13.72

16.35

19.48

23.12

27.18

31.54

Upper Middle Income

16.32

19.36

23.33

28.39

34.28

40.43

46.90

53.39

High Income

19.50

21.97

24.73

27.95

31.72

35.71

39.14

42.18

World

46.78

54.27

63.45

74.69

87.88

102.15

116.78

131.45

Table 2.9
Estimated number of people with dementia (2015, 2030 and 2050) and proportionate increases (2015-2030 and 2015-2050)
according to wealth (GNP)
People with dementia (millions) (% of world total)
Region

Proportionate increase (%)

2015

2030

2050

2015-2030

2015-2050

G7*

12.88 (28)

18.43 (25)

26.28 (20)

43

104

G20**

37.47 (80)

58.99 (79)

99.14 (75)

57

165

G20 excluding G7

24.59 (53)

40.56 (54)

72.86 (55)

65

196

Rest of the world (excluding


G20)

9.31 (20)

15.70 (21)

32.31 (25)

69

247

46.78 (100)

74.69 (100)

131.45 (100)

60

181

World

* G7 countries: Canada, France, Germany, United Kingdom, Italy, Japan, and the United States
** G20 countries: Argentina, Australia, Brazil, Canada, China, France, Germany, India, Indonesia, Italy, Japan, Mexico, Russia, Saudi Arabia, South
Africa, South Korea, Turkey, the United Kingdom, the United States and the remaining EU member countries (Cyprus, Austria, Belgium, Croatia,
Czech Republic, Denmark, Finland, Greece, Ireland, Luxembourg, Malta, Netherlands, Portugal, Slovenia, Spain, Sweden, Poland, Romania, Slovak
Republic, Bulgaria, Estonia, Hungary, Latvia, Lithuania)

24

Alzheimers Disease International: World Alzheimer ReporT 2015

Table 2.10
Total population over 60, crude estimated prevalence of dementia (2015), estimated number of people with dementia (2015, 2030
and 2050) and proportionate increases (2015-2030 and 2015-2050) by GBD world region
GBD Region

Over 60
population
(millions, 2015)

Crude estimated
prevalence (%,
2015)

485.83

Australasia

Number of people with


dementia (millions)

Proportionate increases (%)

2015

2030

2050

2015-2030

2015-2050

4.7

22.85

38.53

67.18

69

194

5.80

6.7

0.39

0.62

1.02

59

163

Asia Pacific High Income

52.21

7.0

3.64

5.68

7.81

56

115

Oceania

0.64

3.5

0.02

0.04

0.09

83

289

Asia, Central

7.43

4.2

0.31

0.44

0.88

43

184

Asia, East

218.18

4.5

9.77

16.60

28.64

70

193

Asia, South

139.85

3.7

5.13

8.61

16.65

68

225

Asia, Southeast

61.72

5.8

3.60

6.55

12.09

82

236

EUROPE

176.61

5.9

10.46

13.42

18.66

28

78

Europe, Western

107.89

6.9

7.45

9.99

14.32

34

92

Europe, Central

26.92

4.0

1.07

1.39

1.90

30

78

Europe, East

41.80

4.6

1.94

2.03

2.44

26

THE AMERICAS

147.51

6.4

9.44

15.75

29.86

67

216

North America

74.88

6.4

4.78

7.28

11.74

52

145

Caribbean

5.78

6.5

0.38

0.60

1.07

60

183

LA, Andean

5.51

6.1

0.34

0.64

1.43

88

322

LA, Central

26.64

5.8

1.54

2.97

6.88

93

348

LA, Southern

9.88

7.6

0.75

1.15

2.05

52

172

LA, Tropical

24.82

6.7

1.66

3.11

6.70

88

305

AFRICA

87.19

4.6

4.03

6.99

15.76

74

291

North Africa / Middle


East

38.93

6.0

2.34

4.35

10.04

86

329

SSA, Central

4.78

3.3

0.16

0.26

0.54

60

238

SSA, East

19.86

3.5

0.69

1.19

2.77

72

300

SSA, Southern

6.06

3.9

0.24

0.35

0.58

46

145

SSA, West

17.56

3.1

0.54

0.85

1.84

58

241

WORLD

897.14

5.2

46.78

74.69

131.45

60

181

ASIA

Abbreviations: LA = Latin America; SSA = Sub-Saharan Africa

25

The Global Impact of Dementia

regions, holds true. Between 2015 and 2050, numbers


in what are now HIC will increase by 116%, in UMIC by
227%, in L-MIC by 223%, and in LIC by 264%.
28% of all people living with dementia live in the worlds
seven richest economies (the G7), while 80% live in the
worlds 20 richest countries (the G20) (Table 2.9).
According to our revised estimates, in 2015, East Asia
is the world region with the most people living with
dementia (9.8 million), followed by Western Europe
(7.4 million). These regions are closely followed by
South Asia with 5.1 million and North America with 4.8
million. At the country level, ten countries are home to
over a million people with dementia in 2015: China (9.5
million), USA (4.2 million), India (4.1 million), Japan (3.1
million), Brazil (1.6 million), Germany (1.6 million), Russia
(1.3 million), Italy (1.2 million), Indonesia (1.2 million) and
France (1.2 million).
Our projections for growth in the number of people
with dementia support our previous prediction that
regional trends fall into three broad groups. Developed
regions started from a high base but will continue to
experience only a moderate proportionate increase.
Latin America and Africa started from a low base but
will continue to experience a particularly rapid increase
in numbers. India, China, and their south Asian and
western-pacific neighbours started from a high base
and will also continue to experience relatively rapid
growth. These trends are driven mainly by population
growth and demographic ageing (Table 2.9). Over
the next fifteen years we forecast a 28% increase in
numbers in Europe, 52% in North America, 52% in
the southern Latin American cone and 56% in the
high income Asia Pacific countries. These rates are
noticeably lower than the predicted 68% growth in
South Asia, 70% in East Asia, 82% in Southeast Asia,
86% in North Africa and the Middle East, and 88-93%
in the rest of Latin America. Predictions of growth
for Southern sub-Saharan Africa are more modest,
consistent with projections for demographic ageing
in the light of persistent high child mortality and the
effects of the HIV epidemic.

2.4 Conclusions and


recommendations
Through systematically reviewing the research
evidence for dementia prevalence in populationbased surveys, and applying strict inclusion and
exclusion criteria, we have identified 273 populationbased studies of the prevalence of dementia, with
605,337 individual participants. This is 106 more
studies than were identified in 2009. We identified
sufficient studies to carry out quantitative regional
meta-analyses applicable to 16 of the 21 WHO
Global Burden of Disease regions, and several of
the previous meta-analyses were enhanced by the
inclusion of more recent studies. This is five more
regions than we were able to meta-analyse in 2009,
due to new evidence from Central Europe and sub-

Saharan Africa. The number of studies for East Asia


has expanded considerably, both because of further
studies published since 2009, and because we were
now able to assess and include more pre-2009
Chinese language publications. For regions in which
we were unable to conduct a meta-analysis, we were
able to supplement the previous ADI/Lancet estimates
with data from well-conducted studies, which could
be applied to the country concerned and, where
appropriate, to some of its regional neighbours. Our
estimates are therefore increasingly data-based, and
we are close to achieving our aim of doing away with
the need for estimates based upon expert opinion.
Our updated prevalence estimates suggest that our
2009 meta-analysis underestimated the current and
future scale of the dementia epidemic by 12-13%. In
highlighting some of the key changes in estimates of
regional prevalence, it is important to reiterate that
these updated estimates reflect improvements in the
extent and quality of the available evidence, and hence,
we would hope, in the precision of the estimates.
The increases in our estimates should certainly not
be taken to imply that the underlying age-specific
prevalence of dementia has changed over the short
interval between the two reports.
A considerable increase (6.6% vs. 3.2%) in the
prevalence estimates for East Asia, a region that
includes the vast population of China and an
estimated 218 million older people in 2015.
Modest to considerable increases (5.5% vs.
2.1-4.0%) in the prevalence estimates for all four of
the sub-Saharan Africa regions.
An important increase (8.7% vs. 5.9%) in
prevalence estimates for the North Africa/Middle
East region, a region accounting for 45% of Africas
population of people aged 60 years and over.
A modest increase (5.8% vs. 4.8%) in the
prevalence estimates for Southeast Asia, a region
that includes the populous countries of Indonesia,
the Philippines, Thailand and Vietnam, and an
estimated 62 million older people in 2015.
The main limitations of this review are a) the
persistently poor coverage of the evidence-base for
several world regions, b) the relatively poor quality
of many studies included in the review, and c) the
between-study heterogeneity of prevalence estimates
within regions. These limitations are each discussed
below. The accuracy of our projections for future
growth in the numbers of people with dementia is
limited by their reliance on population projections,
which have proven to be inaccurate in the past, with
mis-estimations of trends in both fertility and mortality.
Particular caution is advised for projections for specific
countries, for population sub-groups, and for longer
periods into the future. The projections also assume
that age-specific prevalence in each region will remain
constant over time, which is unlikely to be the case,
particularly in regions undergoing rapid demographic,

26

Alzheimers Disease International: World Alzheimer ReporT 2015

epidemiologic and social change. The issue of possible


secular (temporal) trends in prevalence is addressed in
detail in Chapter 5.

2.4.1 Coverage
For this World Alzheimer Report, coverage of evidence
has improved significantly for the East Asia, subSaharan Africa, Central Europe and North Africa/
Middle East regions. For the most part this relates to
new evidence, from recent studies published since
the World Alzheimer Report 2009. However, for East
Asia, in 2009 we were dependent upon our own
searches for English language publications, and a
limited review that included some Chinese language
publications (31 studies in all). We have now been
able to access a large number of additional studies,
which had been published in Chinese language
journals. We are indebted to Dr Kit Yee Chan and
Prof Igor Rudan for first drawing our attention to
this issue through their landmark systematic review
and meta-analysis of 75 studies, published in The
Lancet in 2013(3). Once the additional studies were
taken into account, the prevalence for China seemed
substantially higher than we had previously suspected
(4). At around the same time, Dr Wu and colleagues
published a further review, including studies also from
Hong Kong SAR and Taiwan (72 publications in all),
with findings on prevalence which were consistent
with those of the Lancet review. Dr Wu kindly reviewed
our 2009 database and removed studies that were
not eligible. Dr Wu and Dr Chan then added to it from
their previous review, updated from 2011 to the present
day. Throughout, they applied the ADI World Alzheimer
Report inclusion and exclusion criteria. The result is 89
eligible studies from 1980 to 2015.
Coverage in several other regions remains inadequate.
Eastern Europe (including Russia) and Central Asia
remain essentially uncovered by research, making our
estimates for these regions highly tentative. Southeast
Asia is represented by six studies, but none from
Indonesia whose 22 million older people account for
around 40% of the regions total population aged 60+.
In 2009, we found that descriptive population-based
research into dementia in high income countries
peaked in the early 1990s and then sharply decreased.
This trend has not been reversed in recent years.
The relative lack of coverage by recent high quality
studies is now becoming a serious concern across
the developed world. Prevalence may change over
time and future policymaking and planning require
accurate up-to-date figures. These are no longer
available for most high income countries. Apart from
tracking changes in disease prevalence and incidence,
descriptive surveys can be used to estimate access
to care, and the cost of health and social services
provided for people with dementia. It may be that
biomedical research funding agencies view such
research as unoriginal, and hence uncompetitive when

compared with population research orientated to


elucidation of risk factors. Arguably, the responsibility
for commissioning and funding such research should,
increasingly, be devolved to governments, whose
ministries and agencies will be the main clients for
the data generated. Nationally representative surveys
provide the best information for policymaking and
planning; however, there are still only five countries
(USA(11), Canada(12), Mexico(13), Korea(14) and Singapore
(15)) that benefit from such information. As with the
USA-ADAMS survey, dementia can be efficiently
studied, using a two-phase design nested within an
ongoing, nationally representative survey of ageing and
health (the US Health and Retirement Survey).

2.4.2 Quality
In 2009, we expressed several concerns regarding
the quality of prevalence studies as assessed in the
reviews, particularly since the problems identified can
all lead to biased, inaccurate estimates of prevalence
and numbers. Two main issues were highlighted:
diagnostic procedures for dementia, which
often lack a multi-domain cognitive test battery,
an informant interview, a structured disability
assessment (which could form part of the informant
interview) and a clinical interview to exclude other
causes of cognitive impairment.
misapplication of study designs involving two
or more phases, when no screen negatives are
included at the second stage and/or no weighting
back is carried out in order to estimate the
prevalence correctly.
Encouragingly, there has been a noticeable
improvement in diagnostic assessments in dementia
prevalence surveys, as more than 50% of the most
recent studies included a comprehensive dementia
assessment. However, the informant interview is
still frequently missing from this assessment. More
worryingly, analysis of studies carried out post-2005
reveals that multiphase studies remain enduringly
popular (78% of all studies), but if anything somewhat
less likely to be designed and/or implemented
correctly (only 11% of multiphase studies). The correct
procedures for designing, conducting and analysing
multiphase studies are very well established(34), but it
appears that awareness remains poor among dementia
researchers. It is therefore important to reiterate our
previous recommendations. Research funders and
ethics committees should not fund or approve study
designs that are faulty in this respect. Journals should
adopt clear policies regarding multiphase studies.
For studies that correctly sample a subset of screen
negatives, journals should not publish findings until
results are weighted back in the analysis to account for
different sample fractions. Completed studies that did
not perform diagnostic analysis on a sample of screen
negatives should, of course, still be published,

27

The Global Impact of Dementia

but with the limitation clearly acknowledged, and a


clarification that the study reports minimum prevalence
of dementia.
It is both reassuring, and somewhat puzzling, that
no clear effect on dementia prevalence of incorrect
application of two-phase design, compared with
one phase design, can be detected in either of the
two regional meta-regressions carried out for this
report. Neglecting to sample screen negatives, and/
or weight back should always tend to underestimate
true prevalence. However, two phase studies have
an additional generic problem of substantial attrition
between the first (screening) and second (diagnostic)
phases. Its effect is difficult to predict; true dementia
cases would need to be under-represented among
losses between the two phases to counteract the likely
effect of incorrect application of the two phase design.
Attrition can be minimised by shortening any delay
between the two phases. Multiple imputation could
be used to correct for the lost diagnostic data in the
second phase.
Overall, we observed a tendency for improvement
in study quality in recent years, with high quality
studies especially in Latin America and sub-Saharan
Africa. We have been able to perform a detailed
quality assessment of Chinese studies, which was not
possible in our previous reviews. These raise concerns
over the quality of studies from that region, with only
5% of multistage designs applied correctly and only
15% of studies using a comprehensive diagnostic
assessment. The overall quality score, of 6.2, is
the lowest for all world regions. Efforts need to be
made internationally to ensure dissemination of good
research practice, possibly including the development
of guidelines.

2.4.3 Heterogeneity
A fundamental assumption, implicit in the modelling
approach in this review, was that the prevalence
of dementia was uniform within GBD regions. This
could then be estimated from the available evidence
and applied to all countries in that region. Similarly
to our previous observations in 2009, we observed
statistically significant heterogeneity of age- and
gender-specific prevalence in almost all regions.
Heterogeneity has slightly decreased for some regions,
and increased for others. In many ways, this is not
surprising given the varied languages, cultures, levels
of development, and demographic compositions
of the national and sub-national units that make up
a GBD world region. Indeed, despite the statistical
significance of the heterogeneity, arguably one should
be more impressed by the similarity rather than the
differences in prevalence between studies.
We were only able to explore the possible factors
explaining heterogeneity in two regions, Western
Europe and East Asia, and with a limited number of
covariates. For Western Europe, there seemed to be
significant between-country variation, although this did

not seem to follow any readily interpretable pattern.


For East Asia, as noted in two previous meta-analyses,
there was a substantial trend towards a higher
prevalence for more recently conducted studies. While
this may indicate an increase in the true underlying
prevalence over time, Wu et al.(21) have pointed out
that the temporal trend is considerably diminished
when controlling for study methodological factors,
particularly the diagnostic criteria applied. A higher
prevalence was recorded in studies using more recent
(DSM-IV, 10/66, GMS/AGECAT) versus older (DSMIII, DSM-III-R and ICD-10) diagnostic criteria. It will, in
truth, be difficult definitively to disentangle these two
competing explanations for the striking temporal trend
observed in the region. Our decision, to focus in our
regional meta-analysis on more recent studies from
China (post-2005), was justifiable, in our view, in either
case.
Methodological variability can be reduced through
standardisation of study procedures. Common sense
indicates that the way in which the diagnosis of
dementia is defined and applied may be among the
most important sources of variability. Currently, DSMIV criteria is by far the most widely applied dementia
diagnosis, and although it is not fully operationalised,
it is possible to do so(35). It would also be desirable
to reach an international consensus regarding what
constitutes cognitive impairment, what constitutes
social and occupational impairment, and how these
should be measured. The new DSM-5 criteria for major
neurocognitive disorder may be a step in this direction,
but these criteria have yet to be widely adopted, and
their validity are not established(36-38). Of course,
cultural adaptations may need to be applied. Clinicians
understandably resist the degree of straitjacketing
that full operationalisation imposes, but a parallel set
of more specific research diagnostic criteria would
be highly valuable. Accurate delineation of temporal
trends will require studies that maintain a constant
methodology over time (see Chapter 4).

References
1. Alzheimers Disease International. World Alzheimer Report 2009.
2009.
2. Wu Y, Lee H, Norton S, Chen C, Chen H, He C, et al. Prevalence
Studies of Dementia in Mainland China, Hong Kong and
Taiwan: A Systematic Review and Meta-Analysis. PLOS ONE.
2013;8(6):e66252.
3. Chan KY, Wang W, Wu JJ, Liu L, Theodoratou E, Car J, et al.
Epidemiology of Alzheimers disease and other forms of dementia
in China, 1990-2010: a systematic review and analysis. Lancet.
2013 6/8/2013;381(9882):2016-23.
4. Prince M. Dementia in China: east-west collaboration bears fruit.
Lancet. 2013;381(9882):1967-8.
5. Prince M, Bryce R, Albanese E, Wimo A, Ribeiro W, Ferri C.
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Alzheimers Disease International: World Alzheimer ReporT 2015

Chapter 3

The incidence of dementia

3.1 Introduction
In 2012, a systematic review of the incidence of
dementia worldwide was published in the WHO report
Dementia: a public health priority(1). We found 39
potentially eligible studies, of which 34 were fully
eligible to be included in the meta-analysis. These
studies covered 10 different regions (Western Europe,
North America, East Asia, Latin America Andean, Latin
America Central, Latin America Tropical, Caribbean,
Australasia, Asia Pacific, and West Sub-Saharan
Africa) and meta-analysed their results. The incidence
of dementia increased exponentially with increasing
age. For all studies combined, the incidence of
dementia doubled with every 5.9 year increase in age,
from 3.1/1000 person years (pyr) at age 60-64 to 175.0/
1000 pyr at age 95+. Dementia incidence appeared
to be higher in countries with high incomes (doubling
every 5.8 years from 3.4/1000 pyr to 202.2/1000 pyr)
than in low or middle income countries (doubling every
6.7 years from 2.9/1000 pyr to 99.4/1000 pyr).
The total number of new cases of dementia each year
worldwide was then estimated to be nearly 7.7 million,
implying one new case every 4.1 seconds.

The dementia incidence evidence-base found at that


time was not as extensive as that for the prevalence of
dementia, with good coverage for Europe, some recent
studies for Latin America and China, but relatively few
North American studies, underrepresentation of Africa
and East Asia, and no evidence at all for South or
South East Asia.
Since 2012, no further systematic reviews of the
incidence of dementia have been published. A better
understanding of the pattern and level of incidence in
different world regions is essential.

3.2 Methods
3.2.1 Systematic review
The systematic review on the incidence of dementia
followed a similar process to the review of prevalence
(see Chapter 2). We updated a systematic review of
the world literature conducted in 2011 for the WHO
report Dementia: a public health priority(1). We aimed
to identify population-based studies of the incidence
of dementia, defined according to DSM-IV, ICD-10 or
similar clinical criteria, including people aged 60 years

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The Global Impact of Dementia

and over, and for which the field work for the baseline
phase started on or after 1st January 1980.
Two teams searched English and Chinese databases
separately to update our previous review. The following
search strategy was used to identify relevant papers
published in any language.
English Database Search
Search date: February 2015
Databases: EMBASE, Global Health, MEDLINE,
PsychExtra and PsychInfo
Search terms: dementia AND (incidence OR
epidemiology)
Chinese Database Search
Search date: March 2015
Databases: CNKI, Wanfang, Airti
Search terms: (/dementia OR /dementia OR
/Alzheimer) AND (/incidence OR
/incidence OR /epidemiology)
Again, all stages of the search were completed by
two independent reviewers. For the English search, all
abstracts were read by GA and by either YW or MG.
Papers were excluded at this stage only when the
abstract clearly demonstrated that the paper did not
meet the above criteria. PDF copies of the remaining
publications were read by GA and by either YW or
MG, and a consensus was made on those that met
all criteria. These papers were published in English,
Spanish and Portuguese, all of which could be read by
our team using translation programmes. The Chinese
search was conducted independently by YW and KC,
who compared their study selection at each stage of
screening and review.

3.2.1 Data extraction


All eligible studies were systematically coded for their
study design and characteristics according to the
following criteria:
1 Country
2 WHO/Global Burden of Disease World Region (see
Appendix A for list of countries and regions)
3 Inclusion of urban or rural areas
4 Start and finish dates for fieldwork

13 Diagnostic Instruments (GMS/AGECAT,


CAMDEX, MMSE, Dementia Differential Scale,
Hachinski Ischemic Index, consensus panel,
physical/neurological examination, standardised
questionnaire, clinical evaluation, other).
Incidence data was extracted from the studies as
follows.
According to the data presented in the paper, we
extracted numerator (case) and denominator (personyears), incidence and standard error, or incidence
and 95% confidence intervals. Where not provided,
numerator and denominator could then be calculated
from any of these combinations.
Incidence estimates were stratified differently in
different publications. To maximise the precision of
our meta-analysis, we required incidence estimates
in five-year age-bands. If this was not available in the
publication, we wrote to the authors to request agespecific incidence data. We could therefore model the
effect of age on dementia incidence for all included
studies.

3.2.2 Meta-analysis to estimate


incidence rates and heterogeneity
As for the meta-analysis of prevalence data (see
Chapter 2) we used a random effect exponential
(Poisson) model to assess the effect of age on the
incidence of dementia. The alpha coefficient is an
estimate of over-dispersion and an index of between
study heterogeneity. Age was coded as the mean for
each age group reported. We conducted separate
meta-regressions on all studies combined, and then
separately for high-income countries, low and middle
income countries, and for those regions where there
was sufficient data to attempt a meta-analysis (Asia
East, Western Europe, North America and Latin
America and the Caribbean combined). We then
applied the relevant mean ages to the coefficients
estimated from the models, to estimate incidence in
five years age-bands from 60-95 years, and for those
aged 90 and over. We further estimated the effect of
region and of high income country vs. low or middle
income country location.

5 Lower and upper age limits

3.3 Results

6 Sampling strategy (whole population, catchment


area, random sampling, stratified random
sampling)

3.3.1 Number of studies

7 Design (cohort study)


8 Overall sample size
9 Response rate
10 Case ascertainment (community survey only or
community + institution survey)
11 Diagnostic criteria (not specified, ICD, DSM, GMS/
AGECAT, CAMDEX, other clinical criteria)
12 Presence of clinical diagnosis

In total, 23 new potentially eligible incidence studies


were identified (to add to the 39 potentially eligible
studies already identified in 2011). Eleven of these had
to be excluded from the meta-analysis because case
(numerator) and person-years (denominator) data
could not be extracted(2-12). We therefore identified
twelve new fully eligible studies of which two had
been conducted in Western Europe (Italy(13) and the
Netherlands(14)), four in North America (all in the USA
(15-18)), one in Latin America (Mexico(19)), four in East
Asia (China(20-23)) and one in South Asia (India(24)).

32

Alzheimers Disease International: World Alzheimer ReporT 2015

Added to the 34 studies included in the meta-analysis


for the previous systematic review, 46 studies could be
included in the global meta-analysis. For a complete
list of studies included in the meta-analysis, see the
online appendix at
www.alz.co.uk/research/world-report-2015

3.3.2 Coverage
While the evidence base from Europe and North
America dominated, 26 of the 62 studies were from
outside these regions, and 23 studies were conducted
in low- or middle-income countries. The proportion
of new studies conducted in low- and middle-income
countries was 48% (up from just 31% of studies in the
original review). There were no studies at all from ten
of the GBD regions: Oceania, Southeast Asia, Central
Asia, Central Europe, Eastern Europe, North Africa/
Middle East, Southern, Central and Eastern SubSaharan Africa and Latin America Southern. South
Asia now has two studies (both from India) where
previously there were none. Five studies (four in Europe
and one in the USA) focused on those aged 80 or over,
also known as oldest old.

3.3.3 Incidence study characteristics


Collectively, the meta-analysed studies included
109,952 older people at risk and accumulated
332,323 person-years of follow-up. The median cohort
size at risk was 1,774 (interquartile range 1,187-3,208)
and the median person-years were 5415 (interquartile
range 3,044-10,225). The Western European studies
contributed 42% of the total person years, the
North American studies 24%, the East Asian studies
16%, and the Latin American studies 13%. Just
5% of person-years are contributed by the studies

from Australasia, Asia Pacific, South Asia and subSaharan Africa West combined. For two studies, the
research diagnostic criteria were not clearly specified.
Accounting for the fact that in some studies more
than one set of diagnostic criteria were applied, three
studies applied DSM III criteria, 18 applied DSM-III-R
criteria, and 21 applied DSM-IV criteria. The six 10/66
Dementia Research Group studies applied their own
10/66 Dementia Criteria, four applied ICD-10 criteria,
and one applied GMS-AGECAT.

3.3.4 Estimation of the incidence of


dementia
The incidence of dementia increases exponentially
with increasing age. For all studies combined, the
incidence of dementia doubles with every 6.3 year
increase in age, from 3.9/1000 person years (pyr) at
age 60-64 to 104.8/1000 pyr at age 90+ (see Figure
3.1). The incidence of dementia appears to be higher
in countries with high incomes (doubling every 5.8
years from 3.5/1000 pyr to 124.9/1000 pyr) than in low
or middle income countries (doubling every 8.6 years
from 5.2/1000 pyr to 58.0/1000 pyr).
Overall the incidence of dementia in LMIC was
only 10% lower (RR 0.90, 95% CI: 0.70-1.15) than in
countries with high incomes, and, in contrast to our
previous meta-analysis, was not statistically significant.
The use of the DSM-IV or the cross-culturally validated
10/66 Dementia criteria in the 10/66 Dementia
Research Group studies in Latin America and China
did not make any difference to overall incidence
estimates (RR 1.01, 95% CI: 0.78-1.31). There was
significant heterogeneity in the incidence estimates
when all studies were combined (alpha = 0.18, 95%
CI: 0.12-0.28). Heterogeneity was similar for studies in

Figure 3.1
Estimated age-specific annual incidence of dementia, derived from Poisson random effects models, for world regions for which
meta-analytical synthesis was feasible

Incidence/1000 person years

140.0
120.0
100.0
80.0
60.0
40.0
20.0
0.0

60-64

65-69

70-74

75-79

80-84

85-89

Age group (in years)


HIC

LMIC (DSM)

East Asia

Western Europe

North America (US only)

Latin America and the Caribbean (DSM)

90+

33

The Global Impact of Dementia

HIC (0.17, 95% CI: 0.10-0.28) and LMIC (0.16, 95% CI:
0.08-0.34). Heterogeneity reduced somewhat when
regions (alpha = 0.12, 95% CI: 0.08-0.19) were added to
the model.

the Latin American rate for the Latin American and


Caribbean regions,

For the effect of region, compared to incidence in


Western Europe, that in West sub-Saharan Africa
(0.86, 95% CI: 0.39-1.88), East Asia (0.87, 95% CI:
0.62-1.21), North America 1.02, 95% CI: 0.75-1.39)
and Latin America and the Caribbean (1.04, 95% CI:
0.74-1.46) was similar; and that in Australasia (1.75,
95% CI: 0.78-3.89) and Asia Pacific (1.86, 95% CI:
0.85-4.08) somewhat higher. These findings need to be
interpreted cautiously since sub-Saharan Africa, Asia
Pacific and Australasia were each only represented by
one or two studies.

the HIC rates for the Australasia, and Asia Pacific


regions

the East Asian rate for the East Asian, South East
Asian and South Asian regions,

the LMIC rates for the sub-Saharan regions, NorthAfrica/Middle East and Asia Central regions,
the Global rate for the Oceania region.
The numbers of new cases increases and then
declines with increasing age in each region. In Europe
and the Americas peak incidence is among those
aged 80-89 years, in Asia it is among those aged
75-84, and in Africa among those aged 65-74 (Table
3.2). We estimated over 9.9 million new cases of
dementia each year worldwide, implying one new
case every 3.2 seconds. These new estimates are
almost 30% higher than the annual numbers of new
cases estimated, for 2010, in the 2012 WHO/ADI report
(7.7 million new cases, one every 4.2 seconds). The
regional distribution is similar to that which we had
previously reported, with 4.9 million new cases (49% of
the total) in Asia, 2.5 million (25%) in Europe, 1.7 million
(18%) in the Americas, and 0.8 million (8%) in Africa.
Compared to our previous estimates, the proportion of
new cases arising in Asia, the Americas and Africa has
increased while it has decreased in Europe.

3.3.5 Estimation of the number of


incident cases of dementia per year
We estimated the numbers of annual incident cases
for each GBD world region by first estimating the
numbers at risk (total population in each age group,
minus numbers with prevalent dementia), and then by
applying the appropriate incidence rate, as following:
the Western Europe rate for the European regions,
the North American rate for the North American
region,

Table 3.1
Meta-analysed estimates of dementia incidence, generated from Poisson random effects models
Global Burden
of Disease
Region

Number
of Studies
Included
in MetaAnalysis

Age Group
60-64

65-69

70-74

75-79

80-84

85-89

90+

Age- and genderstandardised incidence,


for those aged 60+
(using Western Europe as
the standard population)

GLOBAL

46

3.9

6.4

10.6

18.3

31.7

53.1

104.8

17.30

HIC

30

3.5

5.9

10.3

18.7

34.0

59.6

124.9

18.39

LMIC (DSM)

16

5.2

7.4

10.7

16.1

24.1

35.2

58.0

14.06

4.9

7.0

10.3

15.4

23.2

34.1

56.6

13.51

18

3.1

5.3

9.3

17.3

32.0

57.0

122.4

17.29

North America
(US Only)

3.8

6.3

10.6

18.7

32.8

55.7

112.0

17.82

Latin America
and the
Caribbean (DSM)

4.6

7.0

11.0

17.2

26.4

40.8

72.1

15.11

ASIA
East Asia
EUROPE
Western Europe
THE AMERICAS

34

Alzheimers Disease International: World Alzheimer ReporT 2015

Table 3.2
Estimated annual numbers of incident cases of dementia, by age group and world region
Region
Australasia
Asia Pacific High Income
Oceania
Asia Central

60-64

90+

Total

5,302

65-69
7,963

70-74
9,970

75-79
13,142

80-84
15,871

85-89
16,734

16,098

85,081

39,964

68,251

95,253

135,498

175,788

168,684

136,890

820,329

952

1,059

1,140

1,115

895

505

307

5,973

4,243

77,767

13,845

11,839

10,615

17,134

12,287

7,805

Asia East

374,859

355,070

343,826

362,013

312,414

176,473

74,229 1,998,885

Asia South

248,166

238,021

245,465

229,362

173,095

98,859

55,871 1,288,840

Asia Southeast

105,806

99,019

100,042

102,452

85,281

57,518

36,835

ASIA

586,953

788,893

781,223

806,311

860,715

775,632

526,580

Europe Central

24,550

32,715

39,657

61,567

77,122

65,186

46,693

347,489

Europe Eastern

41,880

45,376

54,177

117,578

97,717

94,641

55,523

506,891

Europe Western

77,053

121,116

169,166

266,762

339,361

343,308

305,006

1,621,773

143,483

199,207

263,000

445,907

514,200

503,135

407,221

2,476,154

80,601

110,721

131,327

159,018

189,253

185,889

147,345

1,004,154

Caribbean

7,893

8,953

10,857

12,187

11,118

8,148

6,846

66,001

Latin America Andean

7,967

9,003

10,283

11,202

9,863

6,302

2,822

57,442

EUROPE
North America High Income

324,474 4,863,827

Latin America Central

37,194

40,078

45,438

45,695

42,095

29,051

14,507

254,059

Latin America Southern

12,577

15,517

18,717

20,695

20,592

15,549

7,873

111,520

Latin America Tropical

36,707

40,754

43,609

47,986

41,267

31,747

19,290

261,361

182,939

225,026

260,231

296,784

314,187

276,687

70,550

66,606

67,520

68,282

57,115

29,324

12,140

371,538

8,904

9,352

9,115

7,827

5,285

2,430

816

43,729

Sub-Saharan Africa East

35,780

38,398

37,179

33,648

25,931

13,126

5,103

189,165

Sub-Saharan Africa Southern

10,863

11,324

10,775

10,358

8,161

6,512

1,719

59,713

THE AMERICAS
North Africa / Middle East
Sub-Saharan Africa Central

Sub-Saharan Africa West


AFRICA
WORLD TOTAL

198,683 1,754,536

33,931

35,414

33,779

27,014

16,159

6,173

1,492

153,962

160,030

161,095

158,368

147,129

112,651

57,563

21,271

818,106

1,275,345

1,366,550

1,487,911

1,750,534

1,716,669

1,363,965

951,650

9,912,623

3.4 Discussion
While systematically reviewing the evidence for
dementia incidence in population-based surveys, we
have identified 12 new population-based studies of
the incidence of dementia, including a total of 37,728
new participants at risk in our meta-analysis. New
evidence was identified for 6 different regions of the 21
WHO Global Burden of Disease regions. Only one of
those regions (South Asia) was not represented in our
last meta-analysis in 2012; the number of studies has
expanded for four other regions.
The meta-analysed evidence-base for the incidence of
dementia is still not as extensive, in terms of coverage,
as that for the prevalence of dementia. While the
coverage for Europe has not changed much, with only
two new studies added to the meta-analysis, a clear
improvement has been observed in North America
with four new cohort studies included(15, 16, 18, 25). The
meta-analysiss coverage for East Asia has increased

with four new studies from China(20-23), but there is still


no evidence from Central or Southeast Asia. Likewise,
the African continent is currently still only represented
by one study.
With a larger number of studies, and only modest
heterogeneity among studies included in this review,
our new estimates indicated that the incidence
of dementia in LMIC was only 10% lower than in
countries with high incomes, a non-statistically
significant difference. The use of the DSM-IV or the
cross-culturally validated 10/66 Dementia criteria in
the 10/66 Dementia Research Group studies in Latin
America and China did not have a significant impact
upon the meta-analysed estimate of global incidence.
However, the incidence of 10/66 dementia is higher
than that of DSM-IV dementia(26), and when the 10/66
criterion is applied in the meta-analysis the HIC/LMIC
country incidence rates converge. Hence, the drift
of our findings support the conclusion that there is

35

The Global Impact of Dementia

little variation in the incidence of dementia between


countries and regions worldwide.
More research into the incidence of dementia is
required to provide information on regions with no
evidence, and better, more up to date and denser
coverage in regions where some studies have been
conducted. Incidence studies, should, ideally, be
repeated using similar methodology in order to track
secular trends in the incidence of dementia within
populations (see Chapter 4). Incidence is most directly
affected by changes in population exposure to
modifiable risk factors, and would therefore be
the most sensitive indicator of the success of primary
prevention programs that seek to reduce dementia
risk.

References
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2. Matsui Y, Tanizaki Y, Arima H, Yonemoto K, Doi Y, Ninomiya T,
et al. Incidence and survival of dementia in a general population
of Japanese elderly: the Hisayama study. Journal of Neurology,
Neurosurgery and Psychiatry. 2009;80(4):366-70. PubMed PMID:
20093114178. Pubmed Central PMCID: 18977814.

15. Borenstein AR, Wu Y, Bowen JD, McCormick WC, Uomoto


J, McCurry SM, et al. Incidence rates of dementia, alzheimer
disease, and vascular dementia in the japanese american
population in seattle, WA: The kame project. Alzheimer Disease
and Associated Disorders. 2014 2014;28(1):23-9. PubMed PMID:
2014135909.
16. Knopman DS, Roberts RO, Pankratz VS, Cha RH, Rocca WA,
Mielke MM, et al. Incidence of dementia among participants
and nonparticipants in a longitudinal study of cognitive aging.
American Journal of Epidemiology. 2014;180(4):414-23. PubMed
PMID: 2014568479.
17. Plassman BL, Langa KM, McCammon RJ, Fisher GG, Potter GG,
Burke JR, et al. Incidence of dementia and cognitive impairment,
not dementia in the united states. Annals of Neurology. 2011
2011;70(3):418-26. PubMed PMID: 2011502821.
18. Zeki Al-Hazzouri A, Haan MN, Kalbfleisch JD, Galea S, Lisabeth
LD, Aiello AE. Life-course socioeconomic position and incidence
of dementia and cognitive impairment without dementia in
older Mexican Americans: results from the Sacramento Area
Latino Study on Aging. American Journal of Epidemiology.
2011;173(10):1148-58. PubMed PMID: 20113203701.
19. Mejia-Arango S, Gutierrez LM. Prevalence and incidence rates of
dementia and cognitive impairment no dementia in the Mexican
population: data from the Mexican Health and Aging Study.
Journal of Aging & Health. 2011 Oct;23(7):1050-74. PubMed PMID:
21948770. Pubmed Central PMCID: NIHMS424244 PMC3557523.
20. Chen R, Hu Z, Wei L, Ma Y, Liu Z, Copeland JR. Incident dementia
in a defined older chinese population. PLoS ONE. 2011 Sep
2011;6(9). PubMed PMID: 2011533065.
21. Qu Q, Qiao J, Han J, Yang J, Guo F, Luo G, et al. The incidence of
dementia among elderly people in Xi an, China. Chin J Epidemiol.
2005;26(7):529-32.

3. Raina SK, Pandita KK, Sushil R. Incidence of dementia in a


Kashmiri migrant population. Annals of the Indian Academy of
Neurology. 2009;12(3):154-6. PubMed PMID: 20093315389.

22. Tang M, Liu X, Qiu C, Han H, Chen J, Lu J, et al. The incidence of


dementia and Alzheimers disease in Chengdu. Natl Med J China.
2005;42(85):3005-7.

4. De Deyn PP, Goeman J, Vervaet A, Dourcy-Belle-Rose B, Dam


Dv, Geerts E. Prevalence and incidence of dementia among
75-80-year-old community-dwelling elderly in different districts
of Antwerp, Belgium: the Antwerp Cognition (ANCOG) Study.
Clinical Neurology and Neurosurgery. 2011;113(9):736-45.
PubMed PMID: 20113353349.

23. Wu X, Tang Z, Fang X, Guan S, Liu H, Diao L, et al. Study on the


incidence and risk factors of dementia in elderly residents from
com munities in Beijing. Chin J Epidemiol. 2010;31(1):1245-9.

5. Katz MJ, Lipton RB, Hall CB, Zimmerman ME, Sanders AE,
Verghese J, et al. Age-specific and sex-specific prevalence and
incidence of mild cognitive impairment, dementia, and alzheimer
dementia in blacks and whites: A report from the Einstein aging
study. Alzheimer Disease and Associated Disorders. 2012
2012;26(4):335-43. PubMed PMID: 2012695688.
6. Wallin K, Bostrom G, Kivipelto M, Gustafson Y. Risk factors for
incident dementia in the very old. International Psychogeriatrics.
2013 Jul;25(7):1135-43. PubMed PMID: 23574921.
7.

Chene G, Beiser A, Au R, Preis SR, Wolf PA, Dufouil C, et al.


Gender and incidence of dementia in the framingham heart study
from mid-adult life. Alzheimers & Dementia: The Journal of the
Alzheimers Association Jan. 2015 10, 2014;11:310-20.

8. Ganguli M, Lee CW, Snitz BE, Hughes TF, McDade E, Chang


CCH. Rates and risk factors for progression to incident dementia
vary by age in a population cohort. Neurology. 2015;84(1):72-80.
PubMed PMID: 20153036583.
9. Tang Z, Meng Z, Chen B. The epidemiology of dementia in
Beijing. Chin J Epidemiol. 2003;24(8):734-6.
10. Wang D, Bo S, Fu Y, et al. A survey on the incidence of senile
dementia and its correlates in community. Shanghai Archives of
Psychiatry. 2000;12(1):10-2.
11. Zhang M, Katzman R, Chen P. Incidence of dementia
and Alzheimers disease. Chinese Journal of Psychiatry.
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12. Qu et al. A preliminary analysis of the incidence of dementia
and Alzheimers disease in people aged 75 and over. Shanghai
Archives of Psychiatry. 1989;7(3):159-62.
13. Noale M, Limongi F, Zambon S, Crepaldi G, Maggi S, Group IW.
Incidence of dementia: evidence for an effect modification by
gender. The ILSA Study. International Psychogeriatrics. 2013
Nov;25(11):1867-76. PubMed PMID: 23905558.
14. Schrijvers EM, Verhaaren BF, Koudstaal PJ, Hofman A, Ikram
MA, Breteler MM. Is dementia incidence declining?: Trends
in dementia incidence since 1990 in the Rotterdam Study.
Neurology. 2012 May 8;78(19):1456-63. PubMed PMID: 22551732.

24. Mathuranath PS, George A, Neelima R, Sunita J, Kumar MS,


Ramsekhar M, et al. Incidence of Alzheimers disease in India:
a 10 years follow-up study. Neurology India. 2012;60(6):625-30.
PubMed PMID: 20133052964.
25. Plassman BL, Langa KM, Fisher GG, Heeringa SG, Weir DR,
Ofstedal MB, et al. Prevalence of dementia in the United States:
the aging, demographics, and memory study. Neuroepidemiology.
2007 2007;29(1-2):125-32.
26. Prince M, Acosta D, Ferri CP, Guerra M, Huang Y, Llibre
Rodriguez JJ, et al. Dementia incidence and mortality in middleincome countries, and associations with indicators of cognitive
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cohort study. Lancet. 2012;379(9836):50-8. PubMed PMID:
20123266009.

36

Alzheimers Disease International: World Alzheimer ReporT 2015

Chapter 4

Current and future secular trends

4.1 Introduction
Almost all current projections of the scale of the
coming dementia epidemic, including those published
by Alzheimers Disease International(1;2) assume that
the age- and gender-specific prevalence of dementia
will not vary over time, and that population ageing
alone (increasing the number of older people at risk)
drives the projected increases(1-4). The basis for this
assumption is doubtful, and secular trends (that is,
gradual decreases or increases in prevalence over
long-term periods) are perfectly plausible(5). The
prevalence of any condition (the proportion of the
population affected at a point in time) is a product of
its incidence and the average duration of the disease
episode. The incidence is the rate at which new
cases develop within the population. The duration of
dementia equates to time from incidence to death,
given that recovery is, sadly, not possible. Changes in
either or both of these indicators could lead to changes
in age-specific prevalence(1). It should be noted that
a) Trends in the two indicators may not move in the
same direction; for example reductions in incidence
might be accompanied by increases in duration of
survival with dementia, or vice versa; the one effect
tending to cancel out the other in terms of their
overall impact on prevalence.
b) One should not expect that secular trends will be
the same across all world regions, or even among
different population subgroups within one country.
Experience with changing rates of cardiovascular
disease, obesity, diabetes and cancer shows this
clearly. The considerable variability in secular trends
for these chronic diseases reflects different degrees
of progress in improving public health, in improving
access to healthcare, and in strengthening health

systems and services to better detect, treat and


control these conditions.

4.1.1 Possible future trends in the


incidence of dementia
A decline in age-specific incidence of dementia,
at least in high income countries, is theoretically
possible, driven by changes in exposure to suspected
developmental, lifestyle and cardiovascular risk factors
for dementia(5). The World Alzheimer Report 2014
focused upon dementia risk reduction; the evidencebase for modifiable risk factors for dementia(6). The
strongest evidence for possible causal associations
with dementia was for low education in early life, for
hypertension in midlife, and for smoking and diabetes
across the life course. In a recent modelling exercise, it
was estimated that a 10% reduction in these and other
key risk exposures would lead to an 8.3% reduction
in the prevalence of dementia through to 2050, with a
15.3% reduction in prevalence of dementia anticipated
if there were a 20% reduction in exposure
prevalence(7).
In most world regions, each generation is better
educated than the one before. Although trends differ
between countries, genders, age groups and time
periods, there has been a general trend in many high
income countries towards less smoking, falling total
cholesterol and blood pressure levels, and increasing
physical activity. On the other hand, the prevalence
of obesity and diabetes has been increasing in most
developed countries. The picture in many low and
middle income countries is quite different; the trends
in cardiovascular health among older people are in
an adverse direction(8), with a pattern of increasing
stroke(9) and ischaemic heart disease morbidity
and mortality(10-12), linked to an epidemic of obesity,
and increasing blood pressure levels(13). After a lag

37

The Global Impact of Dementia

period, to the extent that these factors are genuinely


causally associated with dementia, one would expect
to see corresponding reductions (or increases) in the
incidence of dementia.

4.1.2 Possible future trends in survival


with dementia
Secular trends in survival with dementia are difficult
to measure. Estimates from clinical services are
confounded by time of diagnosis. If diagnosis is being
made at an earlier stage in the disease process, then
duration of dementia may appear to be increasing,
whereas this may only signify that people with
dementia are in contact with services for a higher
proportion of the overall disease duration. Estimates
from cause of death on death certificates are generally
uninformative for this purpose. In the first instance
these provide information only on secular changes in
the attribution of dementia as a cause of death, and
not on the all-cause mortality rate among people with
dementia. Second, the large increases in the agestandardised rates of death attributed to dementia, for
example in a recent analysis of trends in Europe from
1979 to 2009(14), are likely to reflect a greater propensity
to attribute deaths of people living with dementia to the
disease, rather than to changes in dementia incidence
or survival.
A proper understanding of trends in survival with
dementia will only come from monitoring all-cause
mortality rates of those with and without the disease,
and the ratio between them (standardised mortality
ratio, or hazard ratio) over time. Mortality rates among
older people continue to fall in all world regions, and
for all age groups, accounting for impressive gains in
life expectancy from age 60(15). This is now one of the
main drivers of population ageing, particularly, but not
exclusively, in higher income countries. An important,
but as yet unanswered, question is whether these
trends for declining mortality among older people in
general apply equally to people living with dementia.
Mortality rates among older people are much higher
for those living with dementia. In the 10/66 Dementia
Research Group studies in Latin America, India and
China, after controlling for age and sex, in a Coxs
proportional hazards regression, hazard of death was
1.56 to 5.69 times higher in those with dementia (metaanalysed HR 2.80, 95% CI: 2.48-3.15)(16). Effect sizes
from studies in countries with low or middle incomes
have tended to be higher than those indicated by a
meta-analysis of studies principally from countries
with high incomes (RR 2.63, 95% CI: 2.17-3.21)(17); a
HR of 2.83 (95% CI: 1.10-7.27) in Nigeria(18), and HR of
5.16 (95% CI: 3.74-7.12) in Brazil(19). If age-standardised
mortality rates among people with dementia decline
at the same rate as for those without dementia (i.e.
the adjusted mortality ratio remains constant over
time) survival with dementia, and hence disease
duration, will increase progressively. Since most of the
public health interventions that have been proposed

to reduce the incidence of dementia (for example


tobacco control, and prevention, and treatment of
hypertension) also have benefits in reducing incidence
and mortality from other chronic diseases, one
should expect that reductions in prevalence arising
from reduced incidence of dementia may be offset,
at least to some extent, by reduced mortality and
longer survival with dementia(20). Other factors; for
example, improvements in standards of health and
social care for people with dementia, and provision
or withholding of life-prolonging critical interventions;
might also be expected to have an influence on
mortality rates among people living with dementia. In
well-resourced advanced healthcare settings there is
growing awareness that critical interventions should
not be withheld, when these would improve quality of
life, simply because someone has dementia, and in
the context of end of life care the focus should be on
palliation to improve quality of life, and interventions
that merely prolong life with no other benefit or risk of
harm to the patient should be withheld(21).
In low and middle income countries there is evidence
that people with dementia currently have particular
problems in accessing healthcare that might benefit
their health and survival(22).
Finally, it should be noted that one of the indications
of successful dementia risk reduction may be that
the incidence of dementia is deferred to older ages.
Thus, the average age of onset may increase over
time. Under these circumstances age-specific or
age standardised mortality for people with dementia
may not change, but overall, for all people with
dementia, mortality may be higher and survival with
dementia shorter, reflecting that onset is occurring
closer to the natural end of life. Langa has described
this phenomenon as the compression of cognitive
morbidity(23), a desirable outcome for public health and
individual quality of life, resulting in longer, healthier
lives, with fewer years spent in a state of reduced
independence and needing care.

4.2 Research evidence


In 2009, what very few data were available from certain
high income countries did not suggest any clear
pattern of a decline or increase over time in either the
incidence or prevalence of dementia(1;24;25). Metaanalyses of European studies conducted since 1980
also did not suggest any secular trend in prevalence.
Just a few years later, and linked to a greatly increased
interest in the potential for prevention of dementia by
targeting modifiable risk factors(26;27), the quality and
extent of the evidence has expanded greatly, with
reports from several studies of trends in prevalence
and/or incidence of dementia, and dementia mortality,
within defined populations, using identical or very
similar research methodology over time.

Dementia (DSMIII-R)

4. USA, Indianapolis

9. Japan, Hisayama,
aged 65 years and
over (33)

3.28 (1.75-6.14)

255% increase (AD)

AOR 1.34 (0.97-1.87)

AD

40% increase (p=0.001)

38% increase (dementia)

Dementia (DSM-IV)

8. Umea, Sweden

F 3.8% vs. 5.3%

M 6.8% vs 6.9%

Age 75

F 2.2% vs. 3.7%

M 1.7% vs. 0.9%

Age 70

Stable prevalence for both


age groups

Dementia,

Dementia
historical criteria
(Kay et al 1964)

7. Goteborg, Sweden,
aged 70, and age
75 (29)

AOR 0.97 (0.95-0.98)

Stable prevalence in all age


groups and both genders,
other than women aged 7584 years

1985-2005

2001-2006

1976-2005

20 years

5 years

30 years

Age 75

25 years
1976-2000
Age 75

Age 70

3 years

14 years

11 years

9 years

7 years

18 years

Interval
(years)

Age 70

2004-2007

1988-2002

1991-2002

1993-2002

1988-1995

1993-2011

Period

+12.8% (AD)

+1.9% (dementia)

+8.0%

NA

-1.2% (women
aged 75-84 years)

NA

NA

-3.2%

-3.6%

-1.7%

Relative change
(%) per year

Ratio of AD/VaD increasing from 0.5 in 1985 to 1.4 in


2005

Increase in the prescription of antihypertensive and statin


drugs, cholinesterase inhibitors, and more heart surgery

Prevalence differences not adjusted for other covariates,


but age distribution was similar.

Higher educational level, better results on cognitive


tests, better socio-economic status, better treatment of
vascular risk factors and better general physical health in
the later-born cohorts

Much higher levels of education at the second time point

Increases in levels of hypertension, diabetes, and stroke,


but also higher levels of treatment, consistent with
national trends for African-Americans over this time
period

Education differences accounted for 43% of the


prevalence difference between time points. Residents
of care homes were excluded from the 1993 wave. The
6.2% of 2002 respondents who were residents of care
homes were excluded from the comparative analysis.
This may have biased the comparison.

Increases in levels of education, significantly fewer


IADL limitations but higher rates of cardiovascular risk
factors and cardiovascular disease, including diabetes,
hypertension, obesity, and heart disease.

No changes observed in education level.

Bigger (and statistically significant) dementia prevalence


reduction in men.

Reduction in the proportion of older people, and people


with dementia living in care homes. Increased prevalence
of dementia among care home residents.

Bigger dementia prevalence reduction in older age


groups.

Other findings/notes

Alzheimers Disease International: World Alzheimer ReporT 2015

85 years and over (32)

Dementia (ICD-10)

17.5% vs 17.9%
AOR 0.85 (0.68-1.05)

Stable

(DSM-III-R)

5.5% vs. 6.8% (AD, p=0.26)

(dementia, p=0.35)

6.8% vs 7.5%

Stable

AOR 0.65 (0.58-0.73)

29% reduction

Men AOR 0.40 (0.25-0.65)

Women AOR 1.02 (0.69-1.51)

AOR 0.75 (0.56-1.02)

Non-significant 25%
reduction

Dementia

6. Germany, insurance
claims data, age 65
and over(31)

75 years and over(28)

5. Stockholm,
Sweden,

AD

Moderate/
severe cognitive
impairment

3. HRS. Nationally
representative. 70
years and over(23)

African Americans, 65
years and over (30)

Dementia (DSM-IV)

AOR 0.7 (0.6-0.9)

(GMS/ AGECAT)

2. Spain, Zaragoza, 65
years and over(55)

30% reduction

Dementia

1. UK, MRC CFAS, 65


years and over(40)

Relative change (%)

Outcome/s

Study, setting, age


range

38
The Global Impact of Dementia

39

Table 4.1
Studies estimating changes in prevalence of dementia or Alzheimers disease over time

40

Alzheimers Disease International: World Alzheimer ReporT 2015

Table 4.2
Studies estimating changes in the incidence of dementia or Alzheimers disease over time
Outcome/s

Relative
change (%)

Period

Interval
(years)

Relative
change (%)
per year

Other findings

1. USA,
Indianapolis

Dementia
(DSM-III-R)

55% reduction
(dementia)

19912002

11 years

-5.0%

Biggest reduction in youngest age groups.

-3.7%

See also notes for study 1, table 4.1

African
Americans,
65 years and
over(35)

AD

41% reduction
(AD)

2. USA,
Framingham,
60 years and
over(36)

Dementia
(criteria not
specified)

42% reduction

19802006

26 years

-1.6%

Biggest reduction in youngest age groups.

3. NL,
Rotterdam, 6090 years(37)

Dementia
(DSM-III-R)

Non-significant
25% reduction

4. Germany,
insurance
claims data,
age 65 and
over(38)

Dementia
(ICD-10)

5. USA, Chicago

AD

Study

Directly
observed

No reduction among the least educated.


Significant improvements in educational
status, use of antihypertensive and statin
medication, blood pressure and HDL levels,
and prevalence of smoking, heart disease,
and stroke, whereas prevalence of obesity
and diabetes increased.

19902000

10 years

-2.5%

Hypertension, diabetes and obesity increased.


Higher education. More diabetes treatment,
more antithrombotics and much more
statins. More past but less current smoking.
Substantial reduction in overall mortality - HR
0.63 (0.52-0.77).

20042007 /
20072010

3 years

-6.7%

Study used claims data of the largest public


health insurance company in Germany. Data
contained complete inpatient and outpatient
diagnoses according to ICD-10. For the
analysis of incidence two independent
age-stratified samples were taken, the first
comprising 139,617 persons in 2004 with
a follow-up until 2007; the second 134,653
persons in 2007 with a follow-up until 2010.
Secular trends in clinical diagnosis or helpseeking cannot be excluded.

19972008

11 years

NA

19912002

11 years

NA

19882002

14 years

Not
reported

RR 0.75 (0.561.02)
20% reduction
(women)
19% reduction
(men)

(30)

6. Nigeria,
Ibadan(35)

AHR 0.58
(0.38-0.86)

Stable
OR 0.97 (0.901.04)

Dementia
(DSM-III-R)
AD

Stable
1.5% vs 1.4%
(dementia)
1.0% vs 1.3%
(AD)

Inferred
7. Stockholm,
Sweden,
75 years and
over (28)

Dementia
(DSM-III-R)

Reduced
incidence
inferred
from stable
prevalence
but increased
survival with
dementia

See also notes for study 5, table 4.1

41

The Global Impact of Dementia

Table 4.3
Changes in mortality among people with dementia
Outcome/s

Change in
mortality and/or
mortality hazard
ratio

Period

Interval (years)

Other findings/notes

1. USA, HRS (23)

Mortality hazard
ratio

Non-significant
increase, from HR
2.53 to 3.11, p=0.09

1993-2002

9 years

No report of absolute
mortality rates, stratified
or unstratified. However,
given a presumed decline in
overall mortality, it seems
likely that mortality has also
declined among people with
dementia, but to a lesser
extent

2. Stockholm,
Sweden(28)

Mortality hazard
ratio

Stable HR 2.42
(2.03-2.87) vs. 2.47
(2.03-3.00)

1988-2002

14 years

Similar secular trend (30%


reduction in mortality) to that
for those with no dementia,
and for both genders

2004-2007

3 years

1991-2002

11 years

Study

Directly observed

Mortality rate
among people
with dementia

3. Germany,
insurance claims
data, age 65 and
over(31)

Mortality rate
among people
with dementia

29% reduction
in mortality (HR
0.71, 0.57-0.88)
adjusted for age,
sex, education and
MMSE score
11% increase in
mortality among
women (p<0.0001)
Stable mortality
among men (1%
increase, p=0.75)

Inferred
4. USA,
Indianapolis, African
Americans, 65
years and over(30;35)

Dementia
duration

Increase in survival
with dementia can
be inferred from
stable prevalence
of dementia(30),
but 55% fall in
incidence(35)

Extrapolation from reported


prevalence and incidence
rates at the two time points
suggests that survival time
with dementia is 2.4 times
longer for the second cohort

42

Alzheimers Disease International: World Alzheimer ReporT 2015

4.2.1 Studies of secular trends in


dementia prevalence, incidence and
mortality, applying constant methods to
defined populations
These studies were identified from the systematic
review of studies of dementia prevalence (see Chapter
2), from searching the references of those relevant
studies identified, and in the case of mortality,
by conducting a search using the search terms
(dementia or alzheim*) and (mortality or survival) and
trend*. We identified nine studies that had tracked
dementia prevalence, seven that had tracked dementia
incidence, and four that had tracked mortality
among people with dementia. Findings across these
studies conducted, mainly, in high income countries,
are currently too inconsistent to reach firm and
generalisable conclusions regarding underlying trends
(see Tables 4.1-4.3).

Dementia prevalence
For studies of the prevalence of dementia, just one
study, the MRC Cognitive Function and Ageing Study
(MRC-CFAS) reports a statistically significant decline
in the prevalence of dementia, between 1993 and
2011. This is, however, consistent with a somewhat
higher but statistically non-significant decline in the
prevalence of dementia in Zaragoza, Spain, and with
a decline in the prevalence of moderate to severe
cognitive impairment seen in the USA National Health
and Retirement Survey (HRS). The annual rates of
relative change in prevalence were -1.7%, -3.6% and
-3.2% per year respectively. Set against this, other
studies from Sweden(28;29), and USA(30) indicated a
stable prevalence of dementia, consistent with shortterm trends in German insurance claims data(31). In a
third Swedish study of short-term trends in dementia
prevalence among the oldest old, prevalence had
increased by 40% between 2001 and 2006(32). In the
Japan Hisayama study, there was a non-significant
38% relative increase in the prevalence of dementia
between 1985 and 2005, with a marked increase in
the proportion of cases accounted for by Alzheimers
disease(33). This is consistent with findings from one
other Japanese study of secular trends, with a 23%
increase in the prevalence of dementia between
1980 and 2000(34). This study was excluded from this
review because its ascertainment procedures did
not meet the minimum criteria we have set for our
global estimates of dementia prevalence (see Chapter
2). However, although inadequate, they were held
constant between the three waves of the study.

Dementia incidence
Evidence for a decline in the incidence of dementia is
perhaps marginally stronger. Statistically significant
reductions in the incidence of dementia were reported
in two US population-based studies, one of AfricanAmericans in Indianapolis(35), the other from the

Framingham study(36). The annual rates of relative


change, -5.0% and -1.6% respectively, are consistent
with a non-significant -2.5% annual rate of relative
change in incidence reported in the Rotterdam
study(37). A very substantial decline in dementia
incidence was reported from analysis of German
insurance claims data, but with only a three-year
interval between the midpoints of the two follow-up
periods, this seems unlikely to be explained by a
genuine change in underlying population incidence(38).
To the extent that changes in incidence can be inferred
from changes in prevalence and mortality, data from
repeated surveys in Stockholm, Sweden are also
consistent with a decline in dementia incidence(28). On
the other hand, population-based studies conducted
in Chicago, USA(30), and Ibadan, Nigeria(35) indicated
a stable incidence of dementia over 11 year periods.
One study, reporting a stable incidence of dementia
in Beijing China, was excluded from the review, since
it used different diagnostic criteria at the two time
points(39).

Dementia mortality
Very few of these longitudinal studies have taken the
opportunity to study or report changes in mortality/
survival among people with dementia, or the ratio
of mortality rates between those with and without
dementia. In the Rotterdam study, overall mortality
had declined by 37% in the 10 years between the two
cohorts, but this was not stratified by dementia status.
In the USA HRS, and in the Stockholm study(28), the
mortality ratio remained relatively stable over time,
suggesting that, if mortality rates were falling among
those without dementia, there would have been similar
rates of decline for those living with dementia. This was
clearly demonstrated in the Stockholm study, where a
relative decline in mortality rates of 30% over 14 years
was seen for those with and without dementia, for both
genders(28).
The relationships between trends in prevalence,
incidence and mortality are particularly unclear,
partly because, in most studies, only some of these
parameters were directly observed. In Stockholm
(where prevalence and mortality were observed),
and in Indianapolis (where prevalence and incidence
were observed), findings are consistent with declining
incidence, but stable prevalence, accounted for by
increasing duration of dementia (declining dementia
mortality). Only in the German insurance claims
data were changes in prevalence, incidence and
mortality reported, but these are mutually inconsistent,
perhaps because different samples were used for the
prevalence(31) and incidence/mortality analyses(38).
If the onset of dementia occurs close to the end
of the natural life span, fewer years may be lived
with dementia. Two studies suggest that decline in
incidence may be greater in younger age groups,
suggesting that the incidence of dementia may be
being deferred into older age(35;36). This may be

43

The Global Impact of Dementia

consistent with the observation of an increasing


prevalence of dementia among the oldest in one
Swedish study(32), but is inconsistent with the
observation from the MRC-CFAS study of greater
reductions of dementia prevalence among older age
groups(40).

4.2.2 Secular trends within regions


estimated from meta-analyses of
individual studies
Another approach to estimating secular trends involves
combining evidence from all studies conducted within
a particular country or region, using a meta-analytical
approach, and meta-regression to estimate the effect
of time of study upon prevalence. This approach was
used in the World Alzheimer Report 2009 to estimate
secular trends in dementia prevalence in Europe(1). One
problem with such exercises is that, in contrast with the
studies previously reviewed (section 4.2.1), which hold
such factors constant, there is inevitably considerable
heterogeneity in the nature of the population studied,
and the methods used for the surveys, which may
in turn affect the prevalence recorded. It is therefore
important, to the extent possible, to control for such
effects in the meta-regression.
In the European meta-analyses, we found no evidence
for a trend in prevalence between 1980 and 2008, and
this held true when we updated the evidence base to
include more recent surveys, for the current report (see
Chapter 2).
East Asia is the one other world region with sufficiently
numerous prevalence studies to permit metaregression and estimation of secular trends in dementia
prevalence. A study of secular trends in Japan (part of
the adjacent Asia Pacific High Income region) reported
a tendency towards increasing prevalence, but this
was based on only eight data points, including the four
waves of the Hisayama study(33), and did not control for
study methodology(41). The East Asia evidence-base,
and the population of older people at risk is dominated
by P.R. China, the focus for one meta-analysis(42),
while a second also included studies conducted in
Hong Kong SAR and Taiwan(43). Estimates taken from
the China meta-analysis suggested a 46% relative
increase in age-standardised prevalence from 1990
to 2010 (+2.3% per year), while from the wider review
the increase was 171% from studies conducted in
the pre-1990 period to 2005-2012. However, in that
study, the secular trend was considerably reduced, to
72%, and was no longer statistically significant, having
controlled for study methodology. The most important
potential confounder appeared to be the choice of
dementia diagnostic criteria. Older studies tended to
use DSM-III or DSM-III-R criteria, which then tended
to record a lower prevalence of dementia than those
more recent studies that used DSM-IV dementia, 10/66
Dementia Research Group criteria or GMS/AGECAT
criteria. For the purposes of estimating current

dementia prevalence, and numbers affected, this is


an important finding, which motivated our decision to
use estimates from our meta-analysis for the period
2005 onwards in estimating current prevalence for
China (see Chapter 2). Whether the higher estimates
for this most recent period were explained by real
underlying secular trends, or use of more updated
and valid diagnostic criteria, or both, was relatively
immaterial to this decision. However, for the purposes
of forecasting future trends in prevalence and numbers
in the region, the distinction is clearly crucially
important(44). As previously indicated, there is evidence
that cardiovascular health is deteriorating among
older people in China(10), a trend also evident in other
middle income countries(8). The prevalence of smoking
among adult men in China is among the highest in the
world, and an epidemic among younger women is well
underway(45). Rapid dietary transition is leading to an
epidemic of obesity and cardiometabolic disease(46). A
recent modelling exercise assessed the likely impact
of recent increases in obesity among middle-aged
Chinese on dementia prevalence, assuming a causal
link with dementia; it concluded that future dementia
prevalence in China may have been underestimated by
up to 19% given the additional impact of epidemiologic
transition(47).

4.3 Conclusion
There is no clear evidence from this review to justify
a departure from our current position of assuming
constant age-specific dementia prevalence, when
making projections of the numbers likely to be
affected in the future. Prudent policymakers should
also adopt this approach. Nevertheless, the future
course of the global dementia epidemic, through
to 2050 is likely to depend, at least to some extent,
upon the success or otherwise of continuing efforts
to improve public health(6;27). Those who will be
old in 2050 were born around the 1970s, and have
already received their basic education. They are
now in their third and fourth decades of life, a crucial
sensitive period where, evidence suggests, efforts
to prevent, detect and control obesity, hypertension,
diabetes and dyslipidaemia (high cholesterol) are
likely to have maximum positive impact upon brain
health and dementia risk in late-life(6;27). Such public
health strategies, alongside secular improvements
in education, are plausibly likely to result in a
progressive decline in age-specific incidence of
dementia in high income countries, the magnitude
of which is currently uncertain. However, whether
or not this is accompanied by a decline in the agespecific prevalence of dementia will depend upon
any coincident changes in survival/mortality patterns
for people living with dementia, which are difficult
to predict from current data. Most of the more
plausible scenarios are more consistent with a stable
or modestly increasing disease prevalence(20;48).

44

Alzheimers Disease International: World Alzheimer ReporT 2015

Current evidence of adverse trends in cardiovascular


risk factors and morbidity in low and middle income
countries are consistent with a future increase in
dementia age-specific incidence and prevalence in
those regions.
Studies that use fixed methodology to estimate
changes in dementia prevalence, incidence and
mortality over time, in defined populations, are
uniquely valuable assets. It is important in the future
that more such studies are commissioned. The most
valuable will be those that track all three parameters
over time, which none of the studies reviewed in this
chapter did. Surveys with nationally representative
samples will have the greatest generalisability, and
the greatest potential both to inform and track the
impact of national policies. Where trends are observed
it will be important to relate these to compositional
changes in the population, particularly to changes
in levels of exposure to critical risk factors (see also
following paragraph). However, very few studies made
a comprehensive assessment of such compositional
factors and their changes over time, and in only one
study was there an attempt to attribute changes
in dementia frequency to changes in risk factor
exposure(23). It is clearly important that such studies do
indeed hold methodology constant several of those
reviewed here did in fact make small changes between
waves, the effect of which upon the observed trends
cannot be determined with complete confidence(30;40).
Naturally, diagnostic criteria change over time, but
these too must be held constant to make meaningful
comparisons, a problem that can be surmounted by
using the updated alongside the original criteria, where
feasible and considered important. More intractable
problems are the probable changes in clinician training,
practice, and opinions regarding the operationalisation
of diagnostic criteria(44). This may also be countered
through the application of structured assessments
and diagnostic algorithms, such as the AGECAT
computerised algorithm linked to the Geriatric Mental
State(49), as employed in the MRC-CFAS studies(40), or
the 10/66 Dementia Research Groups cross-culturally
validated diagnostic algorithm(50;51).
Previous modelling exercises have sought to
predict what might happen to the future prevalence
of dementia, given our best estimates of risk
associations, and possible changes in those risk
factor profiles over time(7;47). In the light of the current
review, these estimations appear over-optimistic. An
alternative approach is to observe and correlate actual
changes in risk factor profiles and dementia incidence
over time. This is a well-established modelling
approach in the cardiovascular disease field and
has contributed greatly to our understanding of the
potential for prevention, and the attribution of changes
in disease incidence to specific factors, to further
guide prevention strategies(52-54). Similar studies could,
in the future, be carried out to monitor the impact of

prevention programmes on the future scale of the


dementia epidemic.

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46

Alzheimers Disease International: World Alzheimer ReporT 2015

Chapter 5

The impact of dementia worldwide

5.1 Introduction
In the World Alzheimer Report 2009, we highlighted
that a better understanding of the growing numbers of
people worldwide living with dementia was necessary,
but insufficient to characterise the global impact of the
epidemic. Numbers convey neither the quality of the
individual experience of living with dementia, nor wider
consequences for the household, family, community
and society as a whole. We suggested that the impact
of dementia could be understood at three inter-related
levels:
1. The person with dementia, who experiences ill
health, disability, impaired quality of life and reduced
life expectancy.
2. The family and friends of the person with dementia,
who, in all world regions, are the cornerstone of the
system of care and support.
3. Wider society, which, either directly through
government expenditure, or in other ways, incurs
the cost of providing health and social care and the
opportunity cost of lost productivity. Other social
impacts may be harder to quantify, but no less real.

5.2 The Global Burden of Disease


approach (GBD)
One approach for assessing the impact of dementia,
and comparing it with other health conditions, is
to use the Global Burden of Disease estimates.
These provide information on the relative impact
of different health conditions worldwide, and have
influenced prioritisation for policymaking and planning
nationally, regionally and internationally. The impact
is referred to as burden and expressed in terms of

associated disability and mortality. The World Health


Organizations Global Burden of Disease Report
was first published in 1996, and updated through to
2004(1;2). The key indicator is the Disability Adjusted
Life Year (DALY), a composite measure of disease
burden calculated as the sum of Years Lived with
Disability (YLD) and Years of Life Lost (YLL). Thus,
the DALY summarises the effects of diseases, both
on the quantity (premature mortality) and quality of
life (disability). These effects are summed across
estimated numbers of affected individuals to express
the regional and global impact of disease. The effect
of living for one year with disability depends upon
the disability weight attached to the health condition
concerned. In a wide international consensus
consultation for the Global Burden of Disease report,
disability from dementia was accorded a higher
disability weight (0.67) than that for almost any other
condition, with the exception of severe developmental
disorders(3). This weight signified that each year lived
with dementia entails the loss of two-thirds of one
DALY.

5.2.1 The IHME Global Burden of Disease


estimates
In the 2009 report we explained that the WHO GBD
estimates were shortly to be comprehensively revised
by the Institute of Health Metrics and Evaluation (IHME)
with funding support from the Gates Foundation. IHME
introduced three important innovations(4):
1. The revised estimates would be founded on
new updated systematic reviews of prevalence,
incidence and associated mortality for 291
diseases and injuries. The reviews for dementia
were conducted by ADIs Global Observatory team,
and comprised all of the evidence on dementia

47

The Global Impact of Dementia

prevalence, incidence and mortality summarised


in the World Alzheimer Report 2009(5), and the
subsequent joint WHO/ADI report(6). The evidence
base had extended considerably from 1996, and
our own analyses of these data suggested that
prevalence and numbers of people with dementia
may previously have been underestimated in several
world regions.
2. New disability weights would be calculated for an
expanded set of 220 unique health states, based
on the views of the general public, from surveys of
representative samples of adults in several countries
and cultures. Separate weights would be calculated
for mild, moderate and severe dementia. Presciently,
we warned that the impact of these revised
weights on Years Lived with Disability and Disability
Adjusted Life Years is difficult to predict.

For further contextualisation, IHME disability weights


for mild, moderate and severe forms of other chronic
diseases are summarised in Table 5.1. It can be seen
that the weights for dementia are higher than those
for hearing loss and distance vision impairment, heart
failure and Chronic Obstructive Pulmonary Disease
(COPD), similar to those for stroke and Parkinsons
diseases, and lower than those for alcohol use
disorder, generalised musculoskeletal disorders,
multiple sclerosis, and depression.
Table 5.1
Disability weights for selected conditions (IHME GBD), in
order of the weight allocated for severe disorder(8)
Condition

Mild

Moderate

Severe

Hearing loss

0.01

0.02

0.03

Distance vision impairment

0.00

0.03

0.19

Heart Failure

0.04

0.17

0.19

Chronic Obstructive
Pulmonary Disease

0.02

0.19

0.38

Dementia

0.08

0.35

0.44

Stroke with long term


consequences

0.02

0.31

0.54

Parkinsons Disease

0.01

0.26

0.55

5.2.2 The IHME disability weights

Alcohol Use Disorder

0.26

0.39

0.55

The disability weights accorded to each health


condition have a critical impact upon the estimates of
years lived with disability (YLD), but not years of life
lost (YLL). However, since DALYs are the sum of YLD
and YLL, the impact upon YLD is also apparent in the
summary DALY estimate.

Musculoskeletal problems,
generalised

0.29

0.61

Major Depressive Episode

0.16

0.41

0.66

Multiple sclerosis

0.20

0.45

0.71

3. Age-weighting, by which years lived in old age


(and childhood) were accorded a lower value than
those lived in productive adulthood, and future
discounting (on the basis that a year lived now is
accorded greater value than one to be lived in the
future) have rightly proved controversial and were
abandoned in the IHME GBD. All other things being
equal, this should have resulted in an increase in the
relative contribution of dementia to global burden of
disease.

The disability weights for IHME GBD were estimated


from population surveys of those aged 18 and over in
Bangladesh, Indonesia, Peru, Tanzania and the USA
(n=13,902), boosted by an international internet survey
(n=16,328). The surveys used paired comparison
questions, in which respondents considered two
hypothetical individuals with different, randomly
selected health states and indicated which person they
regarded as healthier.
There was a high correlation among respondent
judgments, and between countries. The correlation
between the new IHME and original GBD disability
weights was moderately high (0.70), although higher
for moderate and severe than for milder health states.
However, the IHME disability weights for dementia
were considerably lower than those for the WHO
GBD(3;7). The IHME weights for mild, moderate and
severe dementia were 0.08, 0.35 and 0.44 respectively
(7), compared to a weight of 0.67 that was applied
uniformly to all severities of dementia in the WHO
GBD(3). The highest disability weights accorded in the
IHME exercise were for schizophrenia; 0.76 during an
acute episode, and 0.58 for the residual chronic state.

The IHME disability weights for dementia can also


be compared with those from a Dutch study that
used a similar approach to the WHO GBD, but a
more structured two phase methodology; 0.27 for
mild dementia (with impairments in daily activities
of living), 0.63 for moderate dementia (unable to live
independently), and 0.94 for severe dementia (requiring
permanent supervision)(9). The later European Disability
Weights project estimated a disability weight of 0.46 for
mild dementia with little variation across panels from
different European countries, and between health care
professionals and lay raters(10).

5.2.3 Comparing the WHO and IHME


Burden of Disease estimates
The most recent WHO GBD estimates refer to the
year 2004, while those for IHME refer to 2010. The
frequency of conditions (prevalence and incidence)
should not have changed markedly over this interval,
but the size of the older population had increased from

48

Alzheimers Disease International: World Alzheimer ReporT 2015

Table 5.2
WHO GBD and IHME GBD estimates of Years of Life Lost, Years Lived with Disability and Disability Adjusted Life Years attributed to
dementia condition among older people
WHO GBD (2004)

IHME GBD (2010)

Aggregated estimates
millions of years (% of
total burden)

Millions of years, per


1,000 older people

Aggregated estimates
millions of years (% of
total burden)

Millions of years, per


1,000 older people

Years of Life Lost

3.4 (0.9%)

5.2

3.9 (0.9%)

5.2

Years Lived with


Disability

15.4 (13.1%)

23.4

6.2 (3.8%)

8.2

Disability Adjusted Life


Years

18.8 (4.2%)

28.7

10.0 (1.7%)

13.2

658.7 million to 754.9 million. Direct comparisons can


be made by considering the proportionate contribution
of dementia to the total burden of disease, and by
comparing estimates per capita (or more precisely
per 1,000 older people). With either approach, it is
clear that, while burden from years of life lost remains
stable across the two methodologies, there has been
a substantial reduction in the estimation of years lived
with disability attributed to dementia, with a knock-on
effect on the DALY estimates (Table 5.2). Per capita,
the IHME GBD estimates of YLL are 0% lower than
WHO GBD estimates, YLD 65% lower, and DALYs 54%
lower.
The IHME estimates were also calculated
retrospectively for the year 1990, applying the same
methodology, including disability weights, as for
the 2010 estimate. This approach incorporates any
changes in the estimates of disease frequency, and
changes in the population distribution (in 1990 there
were 487.5 million people aged 60 years and over
compared with 754.9 million in 2010). Among older
people, DALYs attributed to dementia had increased
from 4.7 million in 1990 (1.1% of the total DALY burden)
to 10.0 million (1.7%) in 2010. As highlighted in IHME
GBD publications(11), the % DALY increase from 19902010 for dementia (113%) is among the largest for any
disease or disease group, comparing with 28% for
ischaemic heart disease, 22% for stroke, 27% for all
cardiovascular diseases, 79% for diabetes, 35% for
cancer, 23% for digestive diseases, 46% for sensory
impairment, and 55% for musculoskeletal diseases
(12). However, adjusting for population size, the DALYs
per 1000 population for dementia were 9.6 million
per 1000 in 1990 and 13.2 million per 1000 in 2010,
indicating that most of this increase was accounted for
by population ageing.

5.2.3.1 Disability Adjusted Life Years


(DALY) estimates
Disability Adjusted Life Years (DALYs) are the sum of
Years Lived with Disability (YLD) and Years of Life Lost
(YLL), hence combining the impact of disability and

premature mortality into a single summary indicator.


Years of life lost make much the larger contribution to
the total. Thus, for the IHME GBD estimates overall
there were 411.6 million years of life lost among people
aged 60 years and over, and 162.8 million years lived
with disability, signifying that, according to the GBD
methodology, premature mortality contributes 72%
of overall DALY burden, and disability 28%. This is
reflected in the list of 10 conditions with the largest
contribution to Disability Adjusted Life Years (Table
5.3), which is dominated by ischaemic heart disease,
stroke and chronic obstructive pulmonary disease,
all conditions with a substantial associated mortality.
Collectively, the ten conditions account for just over
half of the total disease burden among older people.
While the most burdensome conditions are similar
across the two methodologies, their rank order has
changed. Dementia has slipped from 5th to 9th place
on the list, and visual impairment from 4th to 8th.
According to IHME GBD, low back pain was now the
5th most burdensome condition among older people.
Considering people of all ages, dementia ranked
the 49th most burdensome condition worldwide(11).
However, it ranked between 12th and 20th in high
income regions, 26th to 50th in Latin American regions,
41st in East Asia, 70th in south east Asia, and between
66th and 101st in sub-Saharan African regions.

5.2.3.2 Years Lived with Disability (YLD)


estimates
Dementia shortens the lives of those affected.
However, it is prominent among those conditions
of later-life, for which the contribution of chronic
disability and needs for care is greater than that of
premature mortality(12). It is therefore important also
to analyse the contribution of dementia to years lived
with disability (YLD), relative to that of other health
conditions. For this purpose we used the second
order IHME chronic disease clusters, other than for
stroke and heart disease, and dementia, which is part
of the neurological disorders cluster but accounts for
the large majority of YLDs in this group. This analysis

49

The Global Impact of Dementia

Table 5.3
The 10 leading contributors to Disability Adjusted Life Years burden among people aged 60 years and over, according to the WHO
GBD (2004) and IHME GBD (2010) methodology
WHO GBD (2004)

IHME GBD (2010)


Million DALYs (%
contribution to
total)

Rank order

Ischaemic heart disease

77.7 (13.5%)

Stroke

66.4 (11.6%)

33.1 (7.3%)

Chronic obstructive
pulmonary disease

43.3 (7.5%)

Visual impairment

30.9 (6.9%)

Diabetes

22.6 (3.9%)

Dementia

18.8 (4.2%)

Low back pain

19.1 (3.3%)

Diabetes

13.9 (3.1%)

Trachea, bronchus or lung


cancer

18.6 (3.2%)

Hearing loss

13.0 (2.9%)

Falls

12.4 (2.2%)

Trachea, bronchus or lung


cancer

12.8 (2.8%)

Visual impairment

10.4 (1.8%)

Hypertensive heart disease

9.7 (2.2%)

Dementia

10.0 (1.7%)

Osteoarthritis

8.1 (1.8%)

10

Tuberculosis

9.2 (1.6%)

10

Million DALYs
(% contribution
to total)

Rank order

Ischaemic heart disease

67.6 (15.0%)

Stroke

55.4 (12.3%)

Chronic obstructive pulmonary


disease

Condition

Total (all conditions)

450.9

reveals very important shifts in the rank order of


disease contributions, between the GBD and IHME
GBD estimates (Table 5.4). The YLDs attributed to
dementia have been cut by 60%, those for visual
impairment by 66%, those for hearing loss by 42%.
Conversely, the YLDs attributed to mental disorders
have increased by 131%, for musculoskeletal disorders
by 275%, and those for genitourinary disorders by
725%. Dementia has slipped from 2nd to 8th on the
list of conditions making the most impact upon years
lived with disability, visual impairment from 1st to 4th,
and hearing loss from 3rd to 6th. Mental disorders
have been elevated from 5th to 2nd place on the
list, musculoskeletal disorders from 4th to 1st, and
genitourinary disorders from 11th to 7th.

5.2.4 Summary of findings from the


Global Burden of Disease estimates
In summary, dementia is among the top 10 most
burdensome conditions among older people
worldwide. In contrast with other conditions, its impact
comes mainly from years lived with disability, rather
than years of life lost from premature mortality. The
health loss attributed to dementia is much smaller
in the latest IHME GBD estimates (2010) than in
the previous WHO GBD estimates (2004), and its
rank position relative to other impactful conditions
has slipped accordingly. Dementia is not the only
condition to be affected in this way. The relative

Condition

Total (all conditions)

574.4

impact of sensory impairment is much reduced,


while that of mental and musculoskeletal disorders is
much increased. This is, for the most part, because
of changes in disability weights, rather than in the
estimates of the frequency of these disorders. Seismic
shifts in the burden of disease between the original
WHO 2004 estimates(13) and the IHME 2010 estimates
11 have neither been highlighted nor explained in IHME
publications. Instead the focus has been upon the
1990-2010 trends using the IHME methodology, which
do indicate an important global increase in the impact
of dementia(11).

5.2.5 Limitations of the Global Burden of


Disease approach
Concerns have been expressed, in general, regarding
the use of global burden of disease estimates to
determine allocation of resources. An important
critique is that such decisions should be based not
on burden alone, but on potential to reduce burden
through the scaling up of interventions that are costeffective(14;15). A counter argument for conditions such
as dementia, where no such interventions yet exist,
would be that the size of the burden should be an
important factor in determining research spending into
new treatments, and that diagnostic and supportive
services are required to meet the need arising from the
burden.

50

Alzheimers Disease International: World Alzheimer ReporT 2015

Table 5.4
The 12 leading contributors to Years Lived with Disability among people aged 60 years and over, according to the WHO GBD (2004)
and IHME GBD (2010) methodology
WHO GBD (2004)
Chronic disease/ condition

IHME GBD (2010)

Million YLD (%
contribution to total)

Rank order
(YLD)

Chronic disease/ condition

Million YLD (%
contribution to total)

Rank order
(YLD)

Visual impairment

30.9 (26.4%)

Musculoskeletal disorders

42.0 (25.8%)

Dementia

15.4 (13.1%)

Mental disorders

16.2 (10.0%)

Hearing loss

13.0 (11.1%)

Chronic respiratory

11.8 (7.2%)

Musculoskeletal disorders

11.2 (9.6%)

Visual impairment

10.4 (6.4%)

Mental disorders

7.0 (6.0%)

Diabetes/ endocrine

9.0 (5.5%)

Chronic respiratory

5.8 (5.0%)

Hearing loss

7.5 (4.6%)

Heart disease

4.7 (4.0%)

Genitourinary disorders

6.6 (4.1%)

Diabetes/ endocrine

4.6 (3.9%)

Dementia

6.2 (3.8%)

Stroke

4.4 (3.8%)

Heart disease

4.8 (2.9%)

Cancer

2.6 (2.2%)

10

Stroke

3.0 (1.8%)

10

Genitourinary disorders

0.8 (0.7%)

11

Cancer

2.9 (1.8%)

11

Digestive disorders

2.2 (1.9%)

12

Digestive disorders

1.0 (0.6%)

12

Total YLD burden (all


diseases)

117.0 (100%)

The Disability Adjusted Life Year (DALY) metric gives


undue prominence to those conditions strongly
associated with mortality (principally cardiovascular
disease and cancer), diverting attention from other
conditions; for example dementia, stroke, COPD and
vision impairment; where the burden of disease arises
as much, if not more, from disability than mortality(16),
and where long-term care costs can dwarf health
expenditure. The societal costs of these disorders are
enormous, particularly in high income countries with
welfare-based social care systems.
Perhaps the most important limitation arises from the
disability weights attached to individual conditions. The
IHME disability weights have proved to be one of the
most controversial elements of the new Global Burden
of Disease estimates. Other specialist groups have
raised concerns, the most telling of which has been
that some of the weights fail to pass the common
sense test, for example that severe distance vision
impairment (in effect, blindness) should be accorded
a lower weight (0.20) than mild alcoholism (0.26),
moderate rheumatoid arthritis (0.29) or neck pain
(0.22) (17). However, one should be cautious when
critiquing the new weights. As the leaders of the IHME
exercise have pointed out, the weights were developed
using a robust methodology that was approved in
advance by the expert groups, who themselves drafted
the vignettes that were submitted to the respondents in
an unprecedentedly extensive international survey(18).
The stratification of many conditions into mild,
moderate and severe forms was a valuable innovation
introduced by IHME, reflecting the fact that a small
minority of people affected by most conditions are

162.8 (100%)

living with the most severe form of the disorder. For


dementia, arguably, the application of a very high
weight (0.67) to all people with dementia regardless
of disease stage may have led to an overestimation
of impact in the WHO GBD. Apparently, most of the
expert groups, including that for dementia, have
complained that the IHME weights for their condition
were too low, and as the IHME leaders point out, they
cannot all be right(18). There are, however, several valid
concerns.
1. Disability weights will be affected by choice
of respondents used to determine them. The
WHO GBD weights(3) were determined through
a consensus of international experts with the
experience of treating and caring for people with
the health conditions, whereas the IHME weights
reflected, mainly, judgments of the general public(7).
Who is best placed to judge the lived experience
of someone with a health condition, the person
themselves, a carer, a health professional, or
a representative sample of the general public,
comprising a relatively small proportion of those
with more direct experience?
2. The information provided about the health states,
and the precise wording of the vignettes used to
describe each of the health states is likely to have
an important impact upon respondent perceptions.
The instruction for the IHME weighting exercise
was that the condition could only be described in
lay language, and in terms of its impact on health
(symptoms and impairments) rather than the wider
impact on disability and functioning. This was a

51

The Global Impact of Dementia

particular challenge for the dementia vignettes,


which are provided in full in Box 5.1.

Box 5.1

IHME vignettes for mild,


moderate and severe
dementia health states
Mild dementia: The person has noticed
deterioration in their memory, particularly for
recent events. For example, they may forget
that their daughter had visited the previous
day, or when or whether they had taken their
last medication. They also find it difficult to
concentrate, think flexibly, plan, and take
decisions. They are likely to feel bewildered,
anxious and sad. They may become angry and
defensive when others point out errors.
Moderate dementia: The person has severe
memory problems. Only early memories are
retained. Recent events are not remembered, or
rapidly forgotten. They may not know the day,
date or time of day. They often do not know
where they are. They cannot communicate
clearly, having problems finding the right word
and using the wrong words. They may hear
voices or see things that are not there, and can
develop false beliefs, for example that children
are entering their house and stealing things. They
are likely to be anxious, sad, bewildered, and can
become agitated or aggressive.
Severe dementia: The person has complete
memory loss. They may no longer recognise
their close family. They have severe speech
difficulties or are unable to communicate. They
may be apathetic and totally inactive, but at
times can be agitated and verbally and physically
aggressive. They cannot coordinate their physical
movements; may have lost the ability to walk and
feed themselves and have difficulty swallowing.
They are likely to be incontinent of urine and
faeces.

3. Perhaps the most significant issue is the way in


which the questions were framed. Respondents
were asked to compare two health states, and
decide which person was the healthier, not the
least disabled, nor the best able to function
independently. This is consistent with the IHME
concept of health loss, which is central to the new
GBD enterprise. However, this is some way from the

original WHO conceptualisation, which was more


closely linked to the WHO International Classification
of Impairment, Disability and Handicap (ICIDH),
and the later WHO International Classification of
Functioning (ICF), which consider the impact of
health conditions and context upon activity and
participation. IHME weights are, in reality, health
weights rather than disability weights, since they
do not measure the limitations of functioning,
activity, or social participation that by international
consensus define disability(19).

5.2.6 Does the under-prioritisation


of dementia in the Global Burden of
Disease estimates matter?
The WHO, and now the IHME GBD estimates have
been highly influential in setting national, regional and
intergovernmental priorities for policy development and
investment in health care. An example is the WHOs
Mental Health Gap Action Plan (mhGAP); dementia was
one of nine priority mental and neurological disorders
selected explicitly on the basis of their contribution to
global burden of disease (WHO GBD in this instance),
as well as the size of the treatment gap in resource
poor settings(20). The WHO has been criticised in the
past for failing to align its budgetary allocation to
disease burden(21). Similar considerations applied to
the identification of cardiovascular disease, diabetes,
cancers and COPD as leading priorities for the UN
high-level meeting on non-communicable disease
prevention and control, and the acknowledgment that;
Mental and neurological disorders, including
Alzheimers disease, are an important cause
of morbidity and contribute to the global noncommunicable disease burden, for which there
is a need to provide equitable access to effective
programmes and health-care interventions. (22)

Global Burden of Disease estimates have also been


used to hold governments and other bodies to account
for the rationality of allocation of research grant
funding(23-25), and the generation of research evidence
through clinical trials(26) and Cochrane systematic
reviews(27).

5.3 Alternative approaches to


understanding the impact of
dementia
The most important critique of the Global Burden of
Disease estimates is that these fail, in important ways,
to capture the true impact of different chronic diseases
upon disability, needs for care, and attendant societal
costs(19). This limitation is most evident for older
people, among whom most of these needs arise, and
for conditions such as dementia, vision and hearing
loss and musculoskeletal disorders, where most of the
impact comes from disability rather than associated
mortality(12). This was already a problem for the WHO

52

Alzheimers Disease International: World Alzheimer ReporT 2015

GBD estimates(16), and has been greatly exacerbated


with the shift to the IHME system with its new weights,
and its focus upon health loss.

associated with chronic diseases, which provide a


very different picture regarding the societal impact
of dementia relative to other non-communicable
conditions. The evidence test is much more important
than the common sense test referred to earlier. The
relevant evidence has been reviewed previously in the
World Alzheimer Report 2009 and the World Alzheimer
Report 2013(5;29), and is updated and summarised
briefly here:

One approach would be simply to stop using currently


formulated DALYs (or the YLD component) when
assessing the impact of disabling conditions(19). There
is, at least, a strong case for renaming the IHME
indicators as Health Adjusted Life Years (HALYs) and
Years of Health Lost (YHL), to limit the potential for
misinterpretation.

1. Dementia and cognitive impairment are by far the


leading chronic disease contributors to disability,
and, particularly, needs for care (dependence)
among older people worldwide. While older
people can often cope well and remain reasonably
independent even with marked physical disability,
the onset of cognitive impairment quickly
compromises their ability to carry out complex but
essential tasks and, later, their basic personal care
needs. The need for support from a caregiver often
starts early in the dementia journey, intensifies as

An alternative approach would be to incorporate


direct survey assessments of activity limitation, and
participation restriction derived from information
gathered from those affected. Such an approach
has been advocated in the past(16;19;28), and seems
to be being given active consideration by the IHME
leadership(7). The IHME burden of disease estimates
are highly discrepant with findings from studies of the
directly measured disability, dependence, and cost

Table 5.5
Prevalence ratios (PR)* for the independent associations between health conditions (impairments and diagnoses) and a)
disability(16) and b) dependence(30)
Associations with disability
Health conditions, ranked in order of
contribution to dependence
Dementia

Limb paralysis or weakness


Stroke

Depression

Eyesight problems
Arthritis or rheumatism
Stomach or intestine problems
Hearing difficulty

Difficulty breathing

Meta-analysed
PR (95% CI)

Median PAPF
(range by site)

Associations with dependence


Meta-analysed PR
(95% CI)

Median PAPF
(range by site)

1.9

25%

4.5

34%

(1.8-2.0)

(19-44%)

(4.0-5.1)

(23-59%)

1.8

11%

2.8

9%

(1.7-1.9)

(6-34%)

(2.4-3.2)

(1-46%)

1.4

11%

1.8

8%

(1.3-1.5)

(2-21%)

(1.6-2.1)

(2-17%)

1.4

8%

1.7

8%

(1.3-1.5)

(1-23%)

(1.5-2.0)

(0-27%)

1.1

7%

1.2

6%

(1.1-1.1)

(2-18%)

(1.1-1.3)

(0-16%)

1.3

10%

1.1

4%

(1.3-1.4)

(3-35%)

(1.0-1.3)

(0-6%)

1.1

7%

1.1

2%

(1.1-1.2)

(0-23%)

(1.0-1.3)

(0-16%)

1.1

2%

1.1

1%

(1.1-1.2)

(1-9%)

(0.9-1.2)

(0-5%)

1.2

4%

1.2

1%

(1.1-1.3)

(2-9%)

(1.0-1.4)

(0-6%)

* Adjusted for age, sex, education, marital status and other health conditions.
Figures in italics indicate conditions not statistically associated with dependence that have positive PAPF values

53

The Global Impact of Dementia

the illness progresses over time, and continues until


death(29).
2. For low and middle income countries, the
population-based surveys carried out by the 10/66
Dementia Research Group have shown clearly that
disorders of the brain and mind (dementia, stroke
and depression) make the largest independent
contribution, both in terms of the strength of
the association and the population attributable
prevalence fraction (PAPF), to disability(16) and
dependence(30) (see Table 5.5). Dementia makes
the dominant contribution, particularly to needs
for care. These findings are consistent with a large
body of pre-existing evidence from populationbased studies conducted in Canada(31), the USA
(32), Sweden(33;34), and Hong Kong(35), all of which
attest to the leading contribution of dementia and/
or cognitive impairment to prevalent or incident
disability, controlling for comorbidity with other
chronic diseases.
3. Dementia is typically associated with a particular
intensity of needs for care, exceeding the demands
associated with other conditions. In the USA,
caregivers of people with dementia were more likely
than caregivers of people with other conditions
to be required to provide help with getting in and
out of bed (54% vs. 42%), dressing (40% vs. 31%),
toileting (32% vs. 26%), bathing (31% vs. 23%)
managing incontinence (31% vs. 16%) and feeding
(31% vs. 14%)(36). These findings were confirmed
in reports from the 10/66 Dementia Research
Group; in the Dominican Republic and in China
among those needing care, those with dementia
stood out as being more disabled, as needing more
care (particularly support with core activities of
daily living), and as being more likely to have paid
caregivers - dementia caregivers also experienced
more strain than caregivers of those with other
health conditions(37;38).
4. Another proxy indicator of the relevance of dementia
to dependence is the extent to which older people
with dementia use different types of care services
that reflect increasing levels of needs for care,
and the extent to which they are over-represented
among older users of those services. In the USA,
it has been estimated that people with dementia
account for 37% of older people who use nonmedical home care services, at least half of
attendees at adult day centres, 42% of residents
in assisted living and residential care facilities, and
64% of Medicare beneficiaries living in a nursing
home(36). In a US study of older people who needed
help with personal care or instrumental activities
of daily living, those with cognitive impairment
were more than twice as likely as others to receive
paid home care, and used the services twice as
intensively as did cognitively normal users of paid
home care(39). Approximately 30-40% of older
Americans with dementia live in a care home,

compared with just 2% of older adults without


dementia(36;40).
5. Moving into a care home is generally a marker of
particularly high needs for care, although other
factors can be involved. Predictors of transition
into a care home in the USA have been studied in a
review including 77 reports across 12 data sources
that used longitudinal designs and communitybased samples(41). Cognitive impairment was the
health condition that most strongly predicted
transition, with a 2.5 fold increased risk (RR 2.54,
95% CI: 1.43-4.51). Other major chronic conditions
also conferred a significantly increased risk: RR
1.04 for hypertension, 1.15 for cancer and 2.35 for
diabetes, but these were modest compared to the
risk associated with cognitive impairment. Other
chronic conditions including arthritis, lung disease or
cardiovascular disease did not show any significant
association. In a study conducted in Sweden,
dementia was the main predictor of transition into a
care home, with a population attributable fraction of
61%(42).
6. Therefore, the current and future costs of long-term
care will be driven to a very large extent by the
coming epidemic of dementia(29). Our success in
designing and implementing successful strategies
for the prevention of dementia(6), and in identifying
treatments that can alter the course of the disease
will be important determinants of future health and
social care costs, currently rising inexorably in the
context of population ageing.
7. The enormous global societal costs of dementia
were estimated in the World Alzheimer Report
2010, and these estimates have been updated to
2015 in the next chapter. There have been relatively
few attempts to compare dementia costs with
those of other chronic diseases. In the UK, it was
estimated that the health and social care costs for
dementia (23billion in 2008), almost matched the
combined costs of cancer (12bn), heart disease
(8bn) and stroke (5bn)(43). In the US ADAMS study
the national societal cost of dementia in 2010 was
estimated in the range of US$159bn to US$215bn
annually; the component of this that related to care
purchased in the marketplace (i.e. excluding informal
family care costs) was US$109bn, higher than that
for heart disease (US$102bn) and cancer (US$77bn)
(44). In a Swedish study(46), the annual costs of
dementia (50bn SEK) exceeded those of depression
(32.5bn SEK), stroke (12.5bn SEK), alcohol abuse
(21-30bn SEK) and osteoporosis (4.6bn SEK). Few
of these studies take into account comorbidity,
and estimate the independent or attributable
costs of dementia. Dr Zhaorui Liu carried out such
an analysis using data from the 10/66 Dementia
Research Group baseline surveys in Latin America,
India and China (Table 5.6)(45). For all countries
other than India, the attributable cost of dementia
exceeded that of other conditions (depression,

54

Alzheimers Disease International: World Alzheimer ReporT 2015

Table 5.6
Mean attributable cost (International $) of dementia and other chronic conditions in countries in Latin America, India and China.
10/66 Dementia Research Group
Total cost

Cuba

Dominican
Republic

Peru

Venezuela

Mexico

China

India

Whole
sample

Dementia

3851*

3804*

10332*

3497*

4781*

8687*

1764*

5164*

Depression

540

197

1306

2203*

461

7660*

588*

705*

Hypertension

-145

-40

7.0

53

-165

-406*

-109

-50

Diabetes

-0.7

20

610

729*

781*

776*

764*

420*

Ischaemic heart
disease

-253*

378

-136

-215

-106

-132

-355

-158

Stroke

977*

1405*

3542*

1032

2056*

4072*

3251*

2218*

Chronic obstructive
pulmonary disease

-193

-518

-454

-159

-1.6

1961*

209

18

*Statistically significant at 95% level of confidence

hypertension, diabetes, ischaemic heart disease


and stroke). Medical care costs for dementia were
negligible, reflecting limited access to services, but
dementia costs dominated for social care, informal
care ad, paid home care.

References
1

The Global Burden of Disease. A comprehensive assessment of


mortality and disability from diseases, injuries and risk factors in
1990 and projected to 2020. The Harvard School of Public Health,
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World Health Organization. WHO Statistical Information System.


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Murray CJ, Ezzati M, Flaxman AD, Lim S, Lozano R, Michaud C


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Salomon JA, Vos T, Hogan DR, Gagnon M, Naghavi M, Mokdad


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Salomon JA, Vos T, Hogan DR, Gagnon M, Naghavi M, Mokdad


A et al. Common values in assessing health outcomes from
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Stouthard ME, Essink-Bot M, Bonsel GJ. Disability weights for


diseases. A modified protocol and results for a Western European
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5.4 Conclusion
The purpose of this section of the report has been
to provide information about the contribution of
dementia to disability, mortality and dependence,
and, at the societal level, to economic costs. We
have aimed to compare the effects of dementia with
those of other important chronic diseases, taking
account, where possible, of the frequent comorbidity
between physical, mental and cognitive disorders. We
have highlighted that the Global Burden of Disease
estimates fail to reflect the societal impact of dementia,
relative to other chronic diseases and, as such, cannot
be considered to be a reliable tool for prioritisation
for research, prevention, and health or social care
among older people. As Dr Margaret Chan, DirectorGeneral of the World Health Organization, expressed
in her opening remarks at the First WHO Ministerial
Conference on Global Action Against Dementia
(Geneva, 15th March 2015):
I can think of no other disease that has such
a profound effect on loss of function, loss of
independence, and the need for care. I can think
of no other disease so deeply dreaded by anyone
who wants to age gracefully and with dignity. I can
think of no other disease that places such a heavy
burden on families, communities, and societies.
I can think of no other disease where innovation,
including breakthrough discoveries to develop a
cure, is so badly needed.

10 Schwarzinger M, Stouthard ME, Burstrom K, Nord E. Crossnational agreement on disability weights: the European Disability
Weights Project. Popul Health Metr 2003 November 21;1(1):9.
11 Murray CJ, Vos T, Lozano R, Naghavi M, Flaxman AD, Michaud C
et al. Disability-adjusted life years (DALYs) for 291 diseases and
injuries in 21 regions, 1990-2010: a systematic analysis for the
Global Burden of Disease Study 2010. Lancet 2013 December
15;380(9859):2197-223.
12 Prince MJ, Wu F, Guo Y, Gutierrez Robledo LM, ODonnell M,
Sullivan R et al. The burden of disease in older people and
implications for health policy and practice. Lancet 2015 February
7;385(9967):549-62.
13 World Health Organization. The global burden of disease. 2004
update. Geneva: World Health Organization; 2008.
14 Williams A. Calculating the global burden of disease: time for a
strategic reappraisal? Health Econ 1999 February;8(1):1-8.

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15 World Economic Forum and World Health Organization. From


Burden to Best Buys: Reducing the Economic Impact of NonCommunicable Diseases in Low- and Middle-Income Countries.
Cologny/ Geneva: World Economic Forum; 2011.

35 Woo J, Ho SC, Lau S, Lau J, Yuen YK. Prevalence of cognitive


impairment and associated factors among elderly Hong Kong
Chinese aged 70 years and over. Neuroepidemiology 1994;13:508.

16 Sousa RM, Ferri CP, Acosta D, Albanese E, Guerra M, Huang


Y et al. Contribution of chronic diseases to disability in elderly
people in countries with low and middle incomes: a 10/66
Dementia Research Group population-based survey. Lancet 2009
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36 Alzheimers Association. 2013 Alzheimers Facts and Figures.


Chicago, IL: Alzheimers Association; 2013.

17 Taylor HR, Jonas JB, Keeffe J, Leasher J, Naidoo K, Pesudovs K


et al. Disability weights for vision disorders in Global Burden of
Disease study. Lancet 2013 January 5;381(9860):23-6736.
18 Salomon JA, Vos T, Murray CJ. Disability weights for vision
disorders in Global Burden of Disease study - Authors reply.
Lancet 2013 January 5;381(9860):23-4.
19 Grosse SD, Lollar DJ, Campbell VA, Chamie M. Disability and
disability-adjusted life years: not the same. Public Health Rep
2009 March;124(2):197-202.
20 Dua T, Barbui C, Clark N, Fleischmann A, Poznyak V, Van OM
et al. Evidence-based guidelines for mental, neurological,
and substance use disorders in low- and middle-income
countries: summary of WHO recommendations. PLoS Med 2011
November;8(11):e1001122.
21 Nozaki I. WHOs budgetary allocation and disease burden. Lancet
2013 September 14;382(9896):937-8.
22 United Nations General Assembly. Political declaration of the
High-level Meeting of the General Assembly on the Prevention
and Control of Non-communicable Diseases. New York: United
Nations; 2011. Report No.: A/66/L.1.
23 Mitchell RJ, McClure RJ, Olivier J, Watson WL. Rational allocation
of Australias research dollars: does the distribution of NHMRC
funding by National Health Priority Area reflect actual disease
burden? Med J Aust 2009 December 7;191(11-12):648-52.
24 Gross CP, Anderson GF, Powe NR. The relation between funding
by the National Institutes of Health and the burden of disease. N
Engl J Med 1999 June 17;340(24):1881-7.
25 Lamarre-Cliche M, Castilloux AM, LeLorier J. Association
between the burden of disease and research funding by the
Medical Research Council of Canada and the National Institutes
of Health. A cross-sectional study. Clin Invest Med 2001
April;24(2):83-9.
26 Lam J, Lord SJ, Hunter KE, Simes RJ, Vu T, Askie LM. Australian
clinical trial activity and burden of disease: an analysis of
registered trials in National Health Priority Areas. Med J Aust 2015
July;%20;203(2):97-101.
27 Yoong SL, Hall A, Williams CM, Skelton E, Oldmeadow C, Wiggers
J et al. Alignment of systematic reviews published in the Cochrane
Database of Systematic Reviews and the Database of Abstracts
and Reviews of Effectiveness with global burden-of-disease data:
a bibliographic analysis. J Epidemiol Community Health 2015
July;69(7):708-14.
28 Sousa RM, Dewey ME, Acosta D, Jotheeswaran AT, CastroCosta E, Ferri CP et al. Measuring disability across cultures--the
psychometric properties of the WHODAS II in older people from
seven low- and middle-income countries. The 10/66 Dementia
Research Group population-based survey. Int J Methods
Psychiatr Res 2010 March;19(1):1-17.
29 Prince, M., Prina, M., and Guerchet, M. World Alzheimer Report
2013. Journey of Caring. An analysis of long-term care for
dementia. London: Alzheimers Disease International; 2013.
30 Sousa RM, Ferri CP, Acosta D, Guerra M, Huang Y, Ks J et al. The
contribution of chronic diseases to the prevalence of dependence
among older people in Latin America, China and India: a 10/66
Dementia Research Group population-based survey. BMC Geriatr
2010 August 6;10(1):53.
31 Thomas VS. Excess functional disability among demented
subjects? Findings from the Canadian Study of Health and Aging.
Dement Geriatr Cogn Disord 2001 May;12(3):206-10.
32 Wolff JL, Boult C, Boyd C, Anderson G. Newly reported chronic
conditions and onset of functional dependency. J Am Geriatr Soc
2005 May;53(5):851-5.
33 Aguero-Torres H, Thomas VS, Winblad B, Fratiglioni L. The impact
of somatic and cognitive disorders on the functional status of the
elderly. J Clin Epidemiol 2002 October;55(10):1007-12.
34 Aguero-Torres H, Fratiglioni L, Guo Z, Viitanen M, von Strauss E,
Winblad B. Dementia is the major cause of functional dependence
in the elderly: 3-year follow-up data from a population-based
study. Am J Public Health 1998 October;88(10):1452-6.

37 Liu Z, Albanese E, Li S, Huang Y, Ferri CP, Yan F et al. Chronic


disease prevalence and care among the elderly in urban and
rural Beijing, China - a 10/66 Dementia Research Group crosssectional survey. BMC Public Health 2009;9:394.
38 Acosta D, Rottbeck R, Rodriguez G, Ferri CP, Prince MJ. The
epidemiology of dependency among urban-dwelling older people
in the Dominican Republic; a cross-sectional survey. BMC Public
Health 2008 August 13;8(1):285.
39 Johnson, R. W. and Wiener, J. M. A profile of frail older Americans
and their caregivers. Washington DC: Urban Institute; 2006.
40 MetLife Mature Market Institute. Market Survey of Long-Term
Care Costs Care Costs: The 2012 MetLife Market Survey of
Nursing Home, Assisted Living, Adult Day Services, and Home
Care Costs. New York, NY: Metropolitan Life Insurance Company;
2012.
41 Gaugler JE, Duval S, Anderson KA, Kane RL. Predicting nursing
home admission in the U.S: a meta-analysis. BMC Geriatr
2007;7:13.
42 Aguero-Torres H, von Strauss E, Viitanen M, Winblad B,
Fratiglioni L. Institutionalization in the elderly: the role of chronic
diseases and dementia. Cross-sectional and longitudinal
data from a population-based study. J Clin Epidemiol 2001
August;54(8):795-801.
43 Luengo-Fernandez, R., Leal, J., and Gray, A. Dementia 2010. The
prevalence, economic cost and research funding of dementia
compared with other major diseases. A report produced by the
Health Economics Research Centre, University of Oxford for the
Alzheimers Research Trust. Cambridge: Alzheimers Research
Trust; 2010.
44 Hurd MD, Martorell P, Delavande A, Mullen KJ, Langa KM.
Monetary costs of dementia in the United States. N Engl J Med
2013 April 4;368(14):1326-34.
45 Liu Z. Economic Cost of Dementia In Low and Middle Income
Countries (PhD thesis) Kings College London; 2012.
46 Wimo A, Johansson L, Jnsson L. Demenssjukdomarnas
samhllskostnader och antalet dementa i Sverige 2005 (The
societal costs of dementia and the number of people with
dementia in Sweden 2005). Socialstyrelsen (underlag frn
experter), Stockholm, 2007 (artikel nr 2007-123-32)

56

Alzheimers Disease International: World Alzheimer ReporT 2015

Chapter 6

The worldwide costs of dementia

6.1 Introduction
In 2010 ADI presented estimates of the global societal
economic impact of dementia(1). The global cost in
2010 was estimated to be US$ 604 billion. This figure
constituted around 1% of the aggregated world Gross
Domestic Product (GDP), indicating a particularly
significant global socioeconomic impact for this one
condition. Although most people with dementia live in
low or middle income countries (LMIC), almost 90%
of the costs were incurred in high income countries.
These estimates, also included in the WHO/ADI
2012 report, Dementia: a public health priority(2), and
published as a scientific paper(3), have been widely
cited, generally accepted, and influential in raising
awareness of the scale and impact of the current
global epidemic*.
Five years have passed. Our estimates of the likely
prevalence of dementia have changed for some
regions, and the numbers affected have increased
for all regions in line with the increase in the older
population (see Chapter 2). Cost of illness (COI)
estimates have improved, with more recent and
comprehensive studies from several high income

* See for example WHO Director-General Margaret Chans


opening comments to the WHO First Ministerial Conference on
Dementia (http://www.who.int/dg/speeches/2015/dementiaconference/en/) and UK Prime Minister David Camerons speech
to the first G7 Global Action on Dementia Legacy Event (https://
www.gov.uk/government/news/pm-launches-next-phase-ofbritains-fight-against-dementia)

countries, and with coverage extended to include more


high and middle income countries. Thus, it is time to
update our global estimates of the economic impact of
dementia.

6.2 Methods
6.2.1 General approach
The estimates of the global societal economic cost of
dementia provided in this report have been generated
using the same general approach as for the 2010
report. Costs are estimated at the country level and
then aggregated in various combinations to summarise
worldwide cost, cost by Global Burden of Disease
world region, cost by World Bank country income
level (high income, upper middle income, lower middle
income, and low income countries), and costs for the
G7 and G20 countries. For each country there is a
cost per person (per capita) estimate which is then
multiplied by the number of people estimated to be
living with dementia in that country. The per capita
costs are divided into three cost sub-categories:
direct medical costs, direct social care costs (paid and
professional home care, and residential and nursing
home care) and costs of informal (unpaid) care. The
base option for costing informal care is an opportunity
cost approach, valuing hours of informal care by the
average wage for each country.

57

The Global Impact of Dementia

6.2.2 What is new?


These new estimates should be considered to be a
partial update of the previous (2010) estimates, rather
than a full-scale revision. They do benefit from a fully
systematic review of the prevalence of dementia, and
numbers affected (see Chapter 2). We did not carry out
a fully systematic review of service utilisation and cost
of illness studies. However, we have identified several
important cost of illness studies published since 2010.
We have selected those that could be used to replace
much older (and hence outdated) COI data, or could
provide data-based estimates for countries where
estimates had previously had to be imputed due to lack
of relevant data, and have a significant influence on
previous cost estimates. From high income countries,
we have included new cost estimates from the USA(4),
UK(5), Germany(6), Norway(7) Sweden(8), and Ireland (9).
For middle income countries, there is more information
available regarding costs of dementia care, and their
distribution between sub-categories, from seven
countries surveyed by the 10/66 Dementia Research
Group: China, India, Cuba, Peru, Venezuela, Dominican
Republic and Mexico (PhD thesis by Dr Zhaorui Liu(10)).
As in 2010, for countries with no cost data, cost
estimations are derived by imputation. The assumption
for the imputation is that there is a relationship
between a countrys per capita GDP and annual per
capita direct costs of dementia. In the 2010 report,
for LMIC, the partitioning of the imputed total direct
costs into direct medical and social care sector costs
was derived from the only available relevant study,
from China (Wang et al(11)), where two-thirds of the
direct costs were medical and one-third derived from
the social care sector. These proportions were used
as a basis for imputation in many Asian and African
countries. Now there is more information available
from the 10/66 COI studies (China, India, Cuba, Peru,
Venezuela, Dominican Republic and Mexico)(10), where
the proportions are similar to those from Wang et al,
but with a higher proportion of medical care costs
in Latin America (Table 6.1). Data from Africa is still
lacking.
Table 6.1
Proportional distribution of direct medical and social care
costs, by sector
Wang(11)

Zhaorui Lius thesis(10)

China

Latin
America

Asia

All

Direct medical
costs

0.67

0.74

0.66

0.73

Social care
sector costs

0.33

0.26

0.34

0.27

For the 2010 report, there was only one published


cost of illness study from Latin America(12), which was
used for imputation of estimates across the region.
Zhaorui Lius thesis has broadened the available
information from Latin America considerably, making
the imputations much more representative. For further
details and discussions of the principles for imputation,
please see the 2010 report. The correlation between
GDP per capita and annual direct costs of dementia in
the updated set of cost of illness studies used in the
current report is 0.86 (p<0.001).

6.2.3 Updating cost estimates from 2010


to 2015
For the current estimates, all costs are expressed
as 2015 US$. In the USA, one dollar in 2010 would
purchase US$1.09 in 2015, a cumulative inflation
rate over the five years of 9.4%, based on the US
consumer price index. The IMF/WEO (International
Monetary Fund/World Economic Outlook) database
(consumer prices index) was used to generate similar
cost adjustments, between 2010 and 2015, for each
country(13). For countries where no such figures were
available, imputations based on trends from 2010 to
latest available CPI were used (for example: trends
between 2010 and 2012 were applied between 2010 to
2015). For a few countries with very small populations
and not included in the WEO database, United Nations
country profiles were used(14) .
Such imputations were not required for any country
with a major impact on the costs.

6.2.4 Comparing 2010 and 2015


estimates
Besides the updated estimates of prevalence and
numbers, the additional cost of illness data, the
enhancements to the imputation process, and the cost
adjustments, two other issues are important when
interpreting comparisons between 2010 and 2015
costs.
First, there have been shifts in the World Bank (WB)
classification of country income level between 2010
and 2015 (several countries have been upgraded,
see Chapter 1). To facilitate like for like comparisons
between 2015 and 2010, the 2015 costs by country
income level are presented according to both a) the
current 2015 World Bank Classification, and b) the 2010
World Bank Classification, which was used to generate
the estimates for high income countries (HIC), upper
middle income countries (UMIC), lower middle income
countries (L-MIC) and low income countries (LIC)
presented in the World Alzheimer Report 2010.
Second, our current revised estimates of regional
dementia prevalence arguably provide a better
estimate of likely numbers of people with dementia
in 2010, as well as 2015 (Chapter 2). For the World
Alzheimer Report 2009, we estimated 35.6 million
people with dementia in 2010. However, if we apply

58

Alzheimers Disease International: World Alzheimer ReporT 2015

Table 6.2
Worldwide costs of dementia in 2010 and 2015 (billion US$), based on current World Bank country classification each year
Year for cost estimates (basis for prevalence
estimates)

2010 (WAR 2009)

2015 (WAR 2015)

2010

2015

World Bank Country Classification Year


US$ (billions)

Per cent

US$ (billions)

Per cent

Low income

4.4

0.7%

1.2

0.1%

Lower middle income

29.2

4.8%

15.3

1.9%

Upper middle income

32.5

5.4%

86.3

10.5%

High income

537.9

89.1%

715.1

87.4%

Total

604.0

100.0%

817.9

100.0%

the prevalence estimates from the current report, than


we would have estimated 40.1 million people with
dementia in 2010. The estimated numbers for China
have increased considerably as have those for some
countries in Northern Africa, while the estimates for
some high income countries (for example the USA
and UK) are somewhat lower. The 2010 estimates
based on the original prevalence estimates from the
World Alzheimer Report 2009 will be labelled in tables
as WAR 2009, while those based on the prevalence
estimates from the current report will be labelled as
WAR 2015.

6.2.5 Forecasting beyond 2015


Using the trends (2010-2015) in per capita cost
and numbers of people with dementia, both based
upon World Alzheimer Report 2015 prevalence, it is
technically possible to make tentative forecasts of
future growth in costs. We present the estimated costs
in 2030 as well as an estimate of the date when global
cost will cross the threshold of US$ 1 trillion.

6.2.6 Sensitivity analyses


Three sensitivity analyses have been included.
In the 2010 report, the most significant effect in the
sensitivity analysis was the method of quantifying
informal care(1, 3). In the main option, informal care is
quantified in terms of time spent assisting with basic
and instrumental ADLs (activities of daily living), while
a lower cost (only basic ADLs) and a higher cost (basic
and instrumental ADLs, and time spent in supervision)
are included. In the 2010 report, different alternatives
for costing informal care (regression, replacement cost,
25% and 50% of average wage) were used as well as
PPPs (purchase power parities) instead of currency
exchange rates, but these alternative inputs had
smaller effects on the resulting costs than the variation
in caregiver time, and have not been repeated here.
The CPI is used for cost adjustments between 2010
and 2015 in the base option. In a second sensitivity

analysis, the change in GDP in the different countries is


used instead for the cost adjustments.
In a third fixed costs sensitivity analysis, a crude
prevalence-based alternative is presented, without
any new cost of illness data included and without cost
adjustments. This sensitivity analysis focuses on the
impact on costs of the changes in numbers of people
affected.

6.3 Results
6.3.1 Aggregated costs, worldwide, and
by country income level
In the base option, the global costs of dementia
have increased from US$ 604 billion in 2010 to
US$ 818 billion in 2015 (Table 6.2), an increase
of 35.4%. Our current estimate of US$ 818 billion
represents 1.09% of global GDP, an increase from
our 2010 estimate of 1.01%. However, while in HIC the
proportion has increased from 1.24% to 1.42%, there
have been slight falls in costs as a proportion of GDP
in LIC (0.24% to 0.21%), L-MIC (0.35% to 0.29%), and
UMIC (0.50% to 0.46%). Excluding informal care costs,
total direct costs account for 0.65% of global GDP.
The proportion of costs incurred in high income
countries (HIC) is similar to that reported in the World
Alzheimer Report 2010. Since many countries that
were classified as low income or low middle income
countries in 2010 have been upgraded (see Chapter
1), the proportion of worldwide costs incurred in upper
middle income countries (UMIC) has increased from
5.4% to 10.5%, and the proportion incurred in LIC and
L-MIC has decreased commensurately compared with
2010.
The effect of the World Bank reclassification of country
income status is clearer if we compare 2010 and 2015
cost distributions, on a like for like basis, using the
2010 WB classification for both time points (Table
6.3). On this basis, the proportion of costs incurred in
what were low and middle income countries in 2010

59

The Global Impact of Dementia

Table 6.3
Worldwide costs of dementia in 2010 and 2015 (billion US$), based on World Bank country classification 2010
Year for cost estimates (basis for
prevalence estimates)

2010 (WAR 2010)

2015 (WAR 2015)

2010

2010

World Bank Country Classification Year


US$ (billions)

Per cent

US$ (billions)

Per cent

Low income

4.4

0.7%

6.6

0.8%

Lower middle income

29.2

4.8%

57.1

7.0%

Upper middle income

32.5

5.4%

84.5

10.3%

High income

537.9

89.1%

669.6

81.9%

Total

604.0

100.0%

817.9

100.0%

Table 6.4
Worldwide costs of dementia in 2010 and 2015 (billion US$), based on World Bank country classification 2010 and adjusted
prevalence figures for 2010
Year for cost estimates (basis for
prevalence estimates)

2010 (WAR 2009)

2015 (WAR 2015)

2010

2010

World Bank Country Classification Year


US$ (billions)

Per cent

US$ (billions)

Per cent

Low income

5.2

0.9%

6.6

0.8%

Lower middle income

41.2

6.8%

57.1

7.0%

Upper middle income

49.4

8.1%

84.5

10.3%

High income

510.9

84.2%

669.6

81.9%

Total

606.7

100.0%

817.9

100.0%

(particularly middle income countries) has increased,


and the proportion in what were HIC has decreased.

by 35%, HIC costs by 31%, UMIC costs by 71%, L-MIC


costs by 39%, and LIC costs by 27%.

To complete the adjustments for a like for like


comparison, we adjusted the 2010 cost of illness
estimates to take account of the revised estimates of
the regional prevalence of dementia published in this
report, which were used to estimate the 2015 costs
(Table 6.4). Despite the 4.9 million (14%) increase in
the estimated numbers of people with dementia in
2010 when applying the World Alzheimer Report 2015
prevalence estimates, the total (worldwide) cost for
2010 has increased only marginally, from US$ 604.0
billion to US$ 606.7 billion. The explanation for this
is that most of the upwards adjustments of numbers
of people with dementia occurred in low and middle
income countries (where per capita costs are low),
while there were some downwards adjustments in
the estimates of numbers of people affected in HIC
(e.g. USA, Germany, UK) where per capita costs are
high. On the basis of this completely like for like
comparison, it is clear that there have been only
modest changes in the distribution of costs by country
income level, with a modest increase in the proportion
arising in countries classified in 2010 as UMIC, and a
modest reduction in the proportion arising in countries
classified in 2010 as HIC. Global costs have increased

The G7 countries have initiated and lead the Global


Action Against Dementia accepting dementia as
a national and global public health priority. We
also thought that it would be instructive to analyse
worldwide costs according to membership of the G7
and the wider G20 group of nations (Table 6.5). This
analysis reveals a striking concentration of global
costs among the worlds wealthiest nations. Although
the G7 countries account for just over a quarter of
global prevalence, over three-fifths of global costs are
incurred in these seven countries. The G20 nations
account for a remarkable 92% of global costs. The
182 nations that are members of neither G7 nor G20
account for 20% of the global prevalence, but just 8%
of the costs.

6.3.2 Aggregated costs by cost subcategory


The pattern of distribution of costs between the three
major sub-categories (direct medical, social care, and
informal care) has not changed substantially (Table
6.6). As reported in 2010, the proportional contribution
of direct medical care costs is modest, particularly

60

Alzheimers Disease International: World Alzheimer ReporT 2015

Table 6.5
Costs of dementia in 2015 (billion US$), by G7 and G20 country classification
2015 (WAR 2015)
US$ (billions)

Per cent of costs

Numbers of people with


dementia (millions)

Per cent of prevalence

G7*

508.7

62.2%

12.9

27.6%

G20**

754.2

92.2%

37.5

80.1%

G20 excluding G7

245.5

30.0%

24.6

52.6%

Rest of the world (excluding


G20)

63.6

7.8%

9.3

19.9%

World

817.9

100%

46.8

100%

* G7 countries: Canada, France, Germany, Great Britain, Italy, Japan, and the United States
** G20 countries: Argentina, Australia, Brazil, Canada, China, France, Germany, India, Indonesia, Italy, Japan, Mexico, Russia, Saudi Arabia,
South Africa, South Korea, Turkey, the United Kingdom and the United States. The EU is the 20th country in the G20, for the purposes of
this analysis the remaining EU member countries (Cyprus, Austria, Belgium, Croatia, Czech Republic, Denmark, Finland, Greece, Ireland,
Luxembourg, Malta, Netherlands, Portugal, Slovenia, Spain, Sweden, Poland, Romania, Slovak Republic, Bulgaria, Estonia, Hungary, Latvia,
Lithuania) were allocated to the G20 group.
Table 6.6
Sub-category costs of dementia in 2010 and 2015 (billion US$, and percent of total costs), by country income level based on
current World Bank country classification
Direct medical costs

Direct social sector costs

Informal care costs

US$ (billions)

Per cent

US$ (billions)

Per cent

US$ (billions)

Per cent

Low income

0.1

22.3%

0.1

11.5%

0.3

66.2%

Lower middle income

2.9

29.4%

1.6

16.4%

5.3

54.2%

Upper middle income

12.6

28.1%

8.3

18.6%

23.9

53.3%

High income

80.8

14.7%

245.7

44.8%

222.4

40.5%

Total

96.4

16.0%

255.7

42.3%

251.9

41.7%

Low income

0.2

20.4%

0.1

10.4%

0.8

69.2%

Lower middle income

3.7

23.9%

2.0

13.2%

9.6

62.9%

Upper middle income

19.3

22.4%

17.7

20.5%

49.3

57.1%

High income

136.0

19.0%

308.1

43.1%

271.1

37.9%

Total

159.2

19.5%

327.9

40.1%

330.8

40.4%

2010 (WAR 2009)

2015 (WAR 2015)

in HIC. There is an increasing relative contribution


of direct social care sector costs and a decreasing
relative contribution of informal care costs with
increasing country income level.

6.3.3 Aggregated costs by Global Burden


of Disease regional country classification
According to the Global Burden of Disease regional
country classification (Table 6.7), the regional

distribution of costs has not changed markedly


from those published in 2010. Cost estimates have
increased for all world regions. The greatest relative
increase occurred in the African and in East Asia
regions, driven, largely, by the upwards revision of the
prevalence estimates for those regions.
The partition of total costs by sub-categories (direct
medical care costs, social care costs, and informal
care) varies by region, consistent with the pattern

61

The Global Impact of Dementia

estimates are region specific, and these are per capita


estimates. For our updated estimates annual costs per
person range from US$872 (South Asia) to US$56,218
(North America). For all but two regions, the estimate
of per person costs has increased. The median change
among regions was +26.3% (interquartile range +7.8%
to +57.9%)

of variation by country income level. The relative


contribution of informal care is greatest in the African
regions and lowest in North America, Western Europe
and some South American regions (Table 6.8), while
the reverse is true for social sector costs.

6.3.4 Annual costs per person with


dementia

Direct comparison of costs per person by World Bank


country income level is complicated both by the year
of the World Bank classification (2010 vs 2015), and
the basis for prevalence estimates (WAR 2009 vs
WAR 2015). The optimal like for like comparison uses
the World Bank classification of 2010 and the World
Alzheimer Report 2015 prevalence estimates for both
the 2010 and 2015 time points (column 3 vs. column
5 in Table 6.10 below). According to each of four
approaches, per person costs increase steeply with

The comparison of costs per person with dementia,


between the World Alzheimer Report 2010 and
the current update, is most easily summarised
and understood stratified by Global Burden of
Disease region. The issue of whether the World
Alzheimer Report 2010 or World Alzheimer Report
2015 prevalence estimates are applied to the 2010
population to generate numbers of people with
dementia is not relevant, because the prevalence

Table 6.7
Costs of dementia in 2010 and 2015 (billion US$, and percent of worldwide costs), by Global Burden of Disease world region
classification
Year for cost estimates (basis for
prevalence estimates)

2010 (WAR 2009)

2015 (WAR 2015)

2010-2015

US$ (billions)

Per cent

US$ (billions)

Per cent

Per cent change

Australasia

10.1

1.7%

14.1

1.7%

39.6%

Asia Pacific High Income

82.1

13.6%

109.9

13.4%

33.9%

Oceania

0.1

0.0%

0.2

0.0%

59.0%

Asia Central

0.9

0.2%

1.2

0.1%

28.6%

Asia East

22.4

3.7%

42.9

5.2%

91.7%

Asia South

4.0

0.7%

4.5

0.5%

11.8%

Asia Southeast

4.0

0.7%

7.3

0.9%

81.9%

Europe Central

14.2

2.3%

15.0

1.8%

5.7%

Europe Eastern

14.3

2.4%

23.5

2.9%

64.3%

Europe Western

210.1

34.8%

262.6

32.1%

25.0%

North America High Income

213.0

35.3%

268.9

32.9%

26.3%

Caribbean

3.0

0.5%

3.5

0.4%

18.2%

Latin America Andean

0.9

0.2%

1.1

0.1%

27.0%

Latin America Central

6.6

1.1%

15.9

1.9%

140.8%

Latin America Southern

5.1

0.8%

10.1

1.2%

98.7%

Latin America Tropical

7.3

1.2%

15.6

1.9%

113.8%

North Africa / Middle East

4.5

0.7%

16.7

2.0%

270.7%

Sub-Saharan Africa Central

0.1

0.0%

0.3

0.0%

198.6%

Sub-Saharan Africa East

0.4

0.1%

1.5

0.2%

267.4%

Sub-Saharan Africa Southern

0.7

0.1%

2.3

0.3%

221.7%

Sub-Saharan Africa West

0.2

0.0%

0.8

0.1%

298.6%

604.0

100.0%

817.9

100.0%

35.4%

Total

62

Alzheimers Disease International: World Alzheimer ReporT 2015

Table 6.8
Costs of dementia in 2015 (US$ billions), by Global Burden of Disease region classification. Costs in cost categories. Percentages
of each GBD region class costs
Cost sub-category
GBD World region

Direct medical costs

Direct social sector costs

Informal care costs

US$ (billions)

Per cent

US$ (billions)

Per cent

US$ (billions)

Per cent

Australasia

1.0

6.9%

7.1

50.3%

6.0

42.8%

Asia Pacific High Income

7.0

6.3%

56.4

51.3%

46.5

42.4%

Oceania

0.0

17.4%

0.0

8.6%

0.1

74.0%

Asia Central

0.3

29.6%

0.3

25.3%

0.5

45.1%

Asia East

2.2

5.2%

10.2

23.8%

30.5

71.0%

Asia South

0.5

10.7%

0.1

3.3%

3.8

86.0%

Asia Southeast

2.7

36.8%

1.3

18.2%

3.3

45.0%

Europe Central

2.8

18.8%

3.1

20.4%

9.1

60.8%

Europe Eastern

5.7

24.1%

4.9

20.7%

13.0

55.2%

Europe Western

50.8

19.3%

113.0

43.0%

98.9

37.6%

North America High Income

61.1

22.7%

115.5

43.0%

92.3

34.3%

Caribbean

0.8

21.3%

0.8

21.8%

2.0

56.9%

Latin America Andean

0.2

17.8%

0.4

32.6%

0.6

49.5%

Latin America Central

6.2

39.2%

5.5

34.3%

4.2

26.5%

Latin America Southern

2.8

27.8%

2.6

25.2%

4.8

47.0%

Latin America Tropical

5.7

36.8%

5.2

33.4%

4.7

29.9%

North Africa / Middle East

8.5

50.7%

1.2

7.2%

7.0

42.0%

Sub-Saharan Africa Central

0.1

28.5%

0.0

14.1%

0.2

57.3%

Sub-Saharan Africa East

0.3

20.8%

0.2

10.3%

1.0

68.9%

Sub-Saharan Africa Southern

0.4

16.4%

0.2

8.1%

1.7

75.6%

Sub-Saharan Africa West

0.2

22.8%

0.1

11.3%

0.5

66.0%

159.2

19.5%

327.9

40.1%

330.8

40.4%

Total

country income status. Comparison of column 2 with


column 3 illustrates that the reclassification upwards
of populous countries that are still poorer than most
of those in the group that they join brings down the
average per person cost for the higher income level
group. Thus (column 3) in 2015, according to the
latest World Bank income level classification, there is
now little difference in mean per capita cost between
LIC and L-MIC. According to the optimal like for like
comparison (column 4 vs column 3), per person costs
have increased at each of the 2010 country income
levels between 2010 and 2015, but most markedly in
what were, in 2010, upper middle income countries.
In 2015, the mean cost per person with dementia
was US$ 43,680 in G7 countries, US$ 20,187 in G20
countries, and US$ 6,757 in countries that were
members of neither G7 nor G20.

6.3.5 Sensitivity analyses


Depending on how informal care is quantified, there is
great variability in worldwide costs, from US$651 bn
(only basic ADLs) to US$ 1,057 billion (all ADLs, and
supervision), but with little variation in distribution by
country income level (Table 6.11).
If the change in per capita GDP, rather than CPI is used
to update costs from 2010 to 2015 (Table 6.12), the
total costs are somewhat higher than for the CPI base
option (Table 6.2). The marked increase in estimated
costs for upper middle income countries had the most
significant impact on worldwide costs, resulting in a
lower proportion of the total costs for high income
countries compared with the main CPI based option.
Evidently, this reflects patterns of global economic
growth over the period, with a recession in many HIC,
but sustained growth rates in many UMIC.

63

The Global Impact of Dementia

Table 6.9
Costs of dementia in 2010 and 2015 (costs per person with dementia, US$, and percentage change from 2010 to 2015), by Global
Burden of Disease regional classification
2010 (WAR 2009)

2015 (WAR 2015)

Change (%) in per capita costs


(2010-2015)

Australasia

32,370

36,404

12.5%

Asia Pacific High Income

29,057

30,206

4.0%

Oceania

6,059

7,021

15.9%

Asia Central

2,862

3,723

30.1%

Asia East

4,078

4,397

7.8%

Asia South

903

872

-3.5%

Asia Southeast

1,601

2,021

26.3%

Europe Central

12,891

14,056

9.0%

Europe Eastern

7,667

12,104

57.9%

Europe Western

30,122

35,255

17.0%

North America High Income

48,605

56,218

15.7%

Caribbean

9,092

9,387

3.2%

Latin America Andean

3,663

3,375

-7.9%

Latin America Central

5,536

10,349

86.9%

Latin America Southern

8,243

13,448

63.2%

Latin America Tropical

6,881

9,426

37.0%

North Africa / Middle East

3,926

6,955

77.2%

Sub-Saharan Africa Central

1,081

1,880

74.0%

Sub-Saharan Africa East

1,122

2,120

89.0%

Sub-Saharan Africa Southern

6,834

9,490

38.9%

969

1,482

53.0%

Sub-Saharan Africa West

Table 6.10
Per person costs of dementia (US$) in 2010 and 2015, based on World Bank country classification (2010 or 2015) and prevalence
estimates (WAR 2009 or 2015)
2010
Column

2015

2010 (WAR 2010)

2010 (WAR 2015)

2015 (WAR 2015)

2015 (WAR 2015)

Change (%) in
costs per person
(WAR 2015)

World Bank Country


Classification Year

2010

2010

2015

2010

2010

Low income

868

875

1,019

939

7.3%

Lower middle income

3,109

3,259

1,560

3,865

18.6%

Upper middle income

6,827

7,224

5,284

10,467

44.9%

High income

32,865

34,735

36,669

39,595

14.0%

Year for cost estimates


(basis for prevalence
estimates)

64

Alzheimers Disease International: World Alzheimer ReporT 2015

Table 6.11
Costs of dementia in 2015 (billion US$), by 2015 World Bank country income level, according to different approaches to costing
informal care based on different caregiver inputs
Base option

More restrictive

More inclusive

All ADLs

Only basic ADLs

All ADLs and supervision

US$ (billions)

Per cent

US$ (billions)

Per cent

US$ (billions)

Per cent

Low income

1.2

0.1%

0.9

0.1%

1.6

0.2%

Lower middle income

15.3

1.9%

10.7

1.6%

21.7

2.1%

Upper middle income

86.3

10.5%

75.0

11.5%

121.2

11.5%

High income

715.1

87.4%

564.9

86.7%

912.2

86.3%

Total

817.9

100.0%

651.5

100.0%

1056.8

100.0%

Table 6.12
Costs of dementia in 2010 and 2015 by World Bank country income level (billion US$ and percent of total costs), based on current
World Bank country classification for each year and cost adjustments (2010-2015) based on change in per capita GDP in each
country
2010 (WAR 2009)

2015 (WAR 2015, GDP based cost adjustments)

US$ (billions)

Per cent

US$ (billions)

Per cent

Low income

4.4

0.7%

1.1

0.1%

Lower middle income

29.2

4.8%

15.0

1.7%

Upper middle income

32.5

5.4%

182.4

21.0%

High income

537.9

89.1%

671.0

77.2%

World

604.0

100.0%

869.6

100.0%

If a prevalence-based option is used (holding the costs


per person fixed, and ignoring new cost of illness data),
worldwide costs increase by US$ 91.2 billion (15.1%)
compared with US$ 213.9 billion (35.4%) (Table 6.13),
suggesting that just less than half of the increase in
costs between the 2010 and 2015 World Alzheimer
Report estimates are accounted for by increases in
prevalence and numbers affected. The proportion of
costs incurred in HIC decreases somewhat, reflecting
the fact that the greatest increase in estimates of
numbers of people with dementia (between World
Alzheimer Report 2009 and World Alzheimer Report
2015) occur in low and middle income countries.

6.3.6 Forecasts beyond 2015


To make a forecast of future trends in the global
societal economic cost of dementia, we need to
estimate trends in the numbers of people with
dementia, and trends in the per person costs.
Trends per annum between 2010 and 2015 need to
be estimated on a like for like basis. This means a)
applying the World Alzheimer Report 2015 prevalence
estimates to the 2010 and 2015 population structures
to estimate numbers of people with dementia at both
time points, and b) using the same approach, for each

country, to weight the worldwide aggregation of mean


per capita costs.
Based on the estimates from the World Alzheimer
Report 2010, the number of people with dementia has
increased by 31.5% between 2010 (35.6 million) and
2015 (46.8 million). However, if we adjust the estimated
numbers for 2010, by applying the updated prevalence
estimates generated for this report, there would have
been 40.1 million with dementia in 2010, and the
numbers would have increased by 16.6%, or by 3.3%
per year. During the same period the aggregated costs
increased by 35% (7.0% per year), this estimate being
very little affected if calculated instead on the basis
of the adjusted numbers for 2010, applying World
Alzheimer Report 2015 prevalence estimates
(see Table 6.4).
Between 2010 and 2015, the average worldwide cost
per person (a weighted average across countries,
calculated on a like for like basis) increased from
US$15,122 to US$17,483 US$ per year (an increase of
15.6% or 3.1% per year).
The overall annual trends can then be calculated as the
product of the annual inflation factors from increasing
numbers (1.033) and increasing per capita costs (1.031)
= 1.033 x 1.031 = 1.065, or around 6.5% per annum.

65

The Global Impact of Dementia

Table 6.13
Costs of dementia in 2010 and 2015 (billion US$), using World Bank country classification 2010 and cost adjustments (20102015) based on a prevalence-based option
2010 (WAR 2009)

2015 (WAR 2015)

US$ (billions)

Per cent

US$ (billions)

Per cent

Low income

4.4

0.7%

6.1

0.9%

Lower middle income

29.2

4.8%

48.2

6.9%

Upper middle income

32.5

5.4%

57.8

8.3%

High income

537.9

89.1%

583.0

83.9%

World

604.0

100.0%

695.2

100.0%

The contribution of the increase in numbers of people


with dementia and the increase in cost per person with
dementia have a similar impact.
Applying this constant annual inflation factor, the
costs in 2030 will be around US$ 2 trillion and the
threshold of US$ 1 trillion will be crossed in 2018
(Figure 6.1).

6.4 Discussion
6.4.1 The results
The global societal economic cost of dementia,
US$ 818 billion, is an enormous sum; similar in
magnitude to the Gross Domestic Product (GDP) of
countries like Indonesia, the Netherlands, and Turkey,
the 16th to 18th largest economies in the world. The
global costs are also larger than the market values
of companies such as Apple (US$ 742 billion),
Google (US$ 368 billion) and Exxon (US$ 357
billion) (source Forbes: 2015 ranking).
As we reported in 2010, the costs remain concentrated
in countries with higher income levels. There is
a disjunction between the global distribution of

prevalence, 58% of which is accounted for by people


with dementia living in LMIC, and costs, 87% of which
are incurred in HIC. This is accounted for by the lower
per person costs in LMIC, reflecting lower wage costs
and a higher proportion of care provided by informal
unpaid carers rather than professional home carers or
residential care. Costs when expressed as a proportion
of GDP are certainly not negligible in LMIC (ranging
from 0.2 to 0.5%) but again lower than those in HIC
(1.4%). Differences in per person costs by country
income level were only slightly attenuated when the
different purchasing power of one US$ was taken
into account in sensitivity analyses conducted for the
2010 World Alzheimer Report. The uneven distribution
of global costs is even more striking when stratified
according to G7 (62% of worldwide costs incurred by
just seven nations) or G20 membership (92% of global
costs).
Our sensitivity analysis confirms that the assumptions
regarding costing of informal care have a great impact
upon the total costs. Although difficult to quantify,
supervision is an important and significant part of
daily informal care with significant opportunity cost
for carers. If that component is included, the costs

Global costs of dementia (US$ millions)

Figure 6.1
Forecasted global costs of dementia 2015-2030
2500
2000
1500
1000
500
0

2015

2016

2017

2018

2019

2020

2021

2022

Year

2023

2024

2025

2026

2027

2028

2029

2030

66

Alzheimers Disease International: World Alzheimer ReporT 2015

increase considerably. Other assumptions may have


a lesser impact upon the results and comparisons.
Transparency regarding assumptions is crucial to make
comparisons meaningful in any cost of illness analysis.
Our current estimates of global societal costs
of dementia have increased by around 35%
compared with those published in the World
Alzheimer Report 2010. Interpreting these increases
is complex given the multiplicity of plausible underlying
explanations. Increases in aggregated costs can arise
from increases in numbers of people with dementia,
and/or increases in per person costs. The exploratory
analyses that we have conducted suggest that
these two elements each contribute around one half
of the total increase. This estimate is based upon
standardising age-specific prevalence estimates to
those generated for the current report (World Alzheimer
Report 2015) on the assumption that the revised
prevalence estimates merely reflect an enhancement in
the evidence-base rather than any underlying secular
trends in age-specific prevalence between 2010 and
2015 (see Chapters 2 and 4). Therefore, the increase
in numbers, for the purposes of these cost trend
analyses, arises solely from the effects of population
ageing, which is occurring more rapidly in LMIC than
in HIC. Changes in per capita costs are even harder to
interpret. The one thing that is certain is that the cost of
any given service or item of care inflates over time. We
have adjusted costs between 2010 and 2015 according
to consumer price indices (CPI) in each country. On
this basis cumulative cost inflation in the USA was
around 9.4% over the five year period. As developing
economies grow, the cost of salaries and services
tend to inflate more rapidly than prices (a positive
income elasticity effect), so this approach may have
underestimated cost inflation in LMIC relative to HIC,
as indicated by our GDP-based inflation sensitivity
analysis. In either scenario, cost inflation can have
accounted for only part of the increase in per capita
costs.
Per capita costs may also increase because;
a) we have estimated them better, with more up to
date studies, larger and more precise studies, and
studies that have taken a more comprehensive
approach to the range of costs estimated;
b) some services have become more costly, over and
above the rate of inflation;
c) new services have been established, or the coverage
of existing services has improved, or existing service
users are using the same services more intensively.
We do not have adequate data to discern between
these three sets of explanations; a) seems plausible,
since the inclusion of new cost of illness studies has
generally led to increases in estimated per capita
costs for the countries concerned; b) would require
carefully conducted comprehensive unit cost estimates
updated over time, which do not exist or are not readily
accessible (most COI studies use our approach of

updating costs in line with inflation); c) would require


representative population-based surveys of people
with dementia (rather than clinical samples) repeated
over time, to determine secular trends in service
utilisation, which, again are not readily available. Some
studies suggest that the proportion of people with
dementia living in residential care has begun to decline
in HIC, consistent with policy initiatives to provide care
at home where possible(15). However, such a strategy
may not be associated with reduced costs, when all
of the costs of home care, including informal care, are
properly accounted for(16). It has also been suggested
that cost reduction initiatives may be reducing the
intensiveness of home care (for example shorter and
less frequent care worker visits) in the UK(5).
Economic development is proceeding apace in many
low and, particularly, middle income countries. This
has posed a challenge for us in making meaningful
comparisons between country income level groups for
2010 and 2015, since a significant number of countries,
some of them very populous, have moved upwards
in the World Bank classification. The average cost
per person with dementia in the higher WB groups
is diluted by newly promoted countries with lower
economic strength than the original countries in that
particular WB group. At the same time, the remaining
lower income countries are drained by the loss of
more prosperous countries that have moved upwards
in the WB classification. We addressed this problem by
stratifying the 2015 estimates according to the 2010 as
well as the 2015 classification.
However, the important issues here are that these
trends for economic growth may result in increased
awareness, help-seeking and medical diagnosis
(leading to increased direct medical care costs) and a
shift from unpaid informal care to direct costs from the
social care sector. The long term care sector is very
underdeveloped in most LMIC, but economic growth,
accompanied by social and demographic change may
increase demand resulting in the establishment and/
or expansion of a formal long term care sector as a
complement to informal care. If so (and there is some
support for such trends in the current report), the
increase in costs per person with dementia may be
much greater than the basic assumption used for our
forecast of dementia costs globally.

6.4.2 Methodological issues


Although the basics for the global cost estimates
are available cost of illness studies of dementia, the
costing model imputes missing country data based
on the assumed relationship between the economic
strength of a country and resources for dementia
care. For details, please see the World Alzheimer
Report 2010(1). Despite an improvement in coverage,
COI studies from LMIC are rare, with, therefore, a
greater reliance on imputation for these countries.
Nevertheless, the correlation between the GDP per

67

The Global Impact of Dementia

capita and direct costs per person with dementia


seems to be robust.
The current report is not a complete systematic
update, although some important new COI studies are
added as well as data on resource use and costs from
the 10/66 Dementia Research Group. However, the
number of cost components that are included in cost
of illness studies varies, which can make comparisons
problematic. For example, in the new UK report, a
cost estimate of people who had gone missing due to
dementia was included(5) and in the Swedish update,
detailed costs of drug use were included(8). The use
of consumer prices is not the optimal way of adjusting
care costs. Price inflation indices specific to the health
care and social care sector would be better, but
such data are not yet available globally. For the cost
estimates of informal care, an update of the countryspecific average wage would have been preferable.
The cost forecasts should be treated with particular
caution. Besides the generic heterogeneity of COI
studies, and the uncertain impact of including more
recent, but also more comprehensive estimates,
we also had to make assumptions regarding the
appropriate age-specific prevalence estimates to
use at each time point. Furthermore, the dynamics of
change in care patterns across regions, the impact of
diagnostic and treatment strategies such as the Global
Action Against Dementia aspiration for a disease
modifying treatment for Alzheimers disease by 2025,
and the potential for effective primary prevention
programs for dementia, are all hard to forecast. The
assumption of constant annual growth in costs may
well not be correct. As with all forecasts, the near
future (US$ 1 trillion by 2018) is easier to predict than
the distant future (over US$2 trillion by 2030).

6.4.3 The future


It is our hope that more service utilisation and cost
of illness studies will be carried out, improving the
overall quality, coverage and recency of the evidence
base, which, coupled with an ongoing commitment
to monitor trends in prevalence and numbers, will
allow us to estimate global costs and trends with more
accuracy. Our first outstanding task is to address the
limitations with the current estimates, in particular by
completing and documenting a fully systematic review
of relevant studies, and exploring more effective ways
of capturing cost inflation. We are eager to integrate
this work within plans for a Global Observatory to be
coordinated by the World Health Organization, and
to provide regular updates accessible and analysable
through a web interface.

References
1. Wimo A, Prince M. World Alzheimer Report 2010. The global
economic impact of dementia. London; 2010
2. WHO. Dementia: a public health priority. WHO, editor. Geneva:
WHO; 2012.
3. Wimo A, Jonsson L, Bond J, Prince M, Winblad B. The worldwide
economic impact of dementia 2010. Alzheimers Dement. 2013
Jan;9(1):1-11 e3.
4. Hurd MD, Martorell P, Langa KM. Monetary costs of dementia in
the United States. N Engl J Med. 2013 Aug 1;369(5):489-90.
5. Prince M, Knapp M, Guerchet M, McCrone P, Prina M, ComasHerrera A, et al. Dementia UK: an update. London; 2014 Contract
No.: Document Number|.
6. Leicht H, Heinrich S, Heider D, Bachmann C, Bickel H, van den
Bussche H, et al. Net costs of dementia by disease stage. Acta
Psychiatr Scand. Nov;124(5):384-95.
7.

Vossius C, Rongve A, Testad I, Wimo A, Aarsland D. The Use and


Costs of Formal Care in Newly Diagnosed Dementia: A Three-Year
Prospective Follow-Up Study. Am J Geriatr Psychiatry. 2013 Mar
13.

8. Wimo A, L J, Fratiglioni L, Sandman P, Gustavsson A, Skldunger


A. Demenssjukdomarnas samhllskostnader i Sverige 2012.
Stockholm: Socialstyrelsen; 2014. Report No.: 2014-6-3
9. Connolly S, Gillespie P, OShea E, Cahill S, Pierce M. Estimating
the economic and social costs of dementia in Ireland. Dementia
(London). 2014 Jan;13(1):5-22.
10. Zhaorui L. Economic Costs of Dementia in Low and Middle
Income Countries. London: Kings College; 2012.
11. Wang H, Gao T, Wimo A, Yu X. Caregiver time and cost of home
care for Alzheimers disease: a clinic-based observational study in
Beijing, China. Ageing Int (in press). 2010.
12. Allegri RF, Butman J, Arizaga RL, Machnicki G, Serrano C,
Taragano FE, et al. Economic impact of dementia in developing
countries: an evaluation of costs of Alzheimer-type dementia in
Argentina. Int Psychogeriatr. 2007 Aug;19(4):705-18.
13. IMF. International Monetary Fund, World Economic Outlook
Database. 2015 April 2015.
14. UN data. Country profile [database on the Internet]. United
Nations. 2015 [cited. Available from: https://data.un.org/
CountryProfile.aspx.
15. Matthews FE, Arthur A, Barnes LE, Bond J, Jagger C, Robinson
L, et al. A two-decade comparison of prevalence of dementia in
individuals aged 65 years and older from three geographical areas
of England: results of the Cognitive Function and Ageing Study I
and II. Lancet. 2013 Oct 26;382:1405-12.
16. ADI. World Alzheimer Report 2013. Journey of Caring. An analysis
of long term care for dementia. London; 2013

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Chapter 7

Conclusions and recommendations

7.1 Summary
7.1.1 Prevalence and numbers affected
We estimate that there are now 46.8 million people
living with dementia worldwide, with numbers
projected to nearly double every 20 years, increasing
to 74.7 million by 2030 and 131.5 million by 2050.
These estimates are 12-13% higher than those for the
corresponding years in our World Alzheimer Report
2009. The increases are accounted for by two factors.
First, the 2012 UN population estimates include larger
numbers of older people than had previously been
thought. Second, the evidence base regarding the
prevalence of dementia has expanded considerably,
particularly for East Asia, sub-Saharan Africa and
North Africa/Middle East. The enhanced evidence
base indicates a higher age-standardised prevalence
of dementia in those regions than had previously been
estimated, but does not necessarily indicate a secular
trend towards increased prevalence over time.
We estimate that 58% of people with dementia live in
low or middle income countries, a proportion that is
anticipated to rise to 63% by 2030 and 68% by 2050.
Increases in numbers of people with dementia will
be much steeper in low and middle income countries
(LMIC) than in high income countries (HIC). The
numbers of people living with dementia will double in
HIC and more than treble in LMIC through to 2050.
From our comprehensive review and meta-analysis
of incidence rates worldwide, we estimate that there

will be 9.9 million new cases of dementia in 2015, or


one every 3.2 seconds. 49% of these will arise in Asia,
compared with 25% in Europe, 17% in the Americas
and 8% in Africa. The estimate of annual new cases for
the 2012 WHO/ADI report (7.7 million, or one new case
every 4.1 seconds) referred to 2010, and is therefore
not directly comparable.

7.1.2 Possible future trends in prevalence


and incidence
Our current projections for numbers and costs
assume that the age-specific prevalence of dementia
will remain stable over time. While there has been
much interest in the possibility that the age-specific
prevalence of dementia may have been declining
recently in high income countries, the evidence to
support this is currently weak and inconclusive. Some
studies do support such a secular trend, but others
do not, and the number of studies that have been
able to address this question using standardised
methodology, applied to comparable populations over
time has been quite limited. Evidence for a decline in
incidence in HIC studies is slightly stronger, although
still inconclusive. For high income countries, a pattern
of stable or increasing prevalence despite declining
incidence seems plausible and is suggested by
findings from some studies and modelling exercises.
The public health improvements that may drive
declining incidence rates may also result in improved
survival of people living with dementia. There is a
consistent trend from several reviews for an increasing

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The Global Impact of Dementia

trend in the recorded prevalence of dementia in East


Asia, and in China specifically. However, it is uncertain
whether this relates to a genuine trend in underlying
prevalence, or an artefact arising from changes in
diagnostic criteria over time.

7.1.3 Impact
While dementia shortens the lives of those affected,
its greatest impact is upon the quality of life, both
of those living with dementia, and their family and
caregivers. A large body of evidence, reviewed in this
report, suggests that, among older people and at
the population level, dementia makes a much larger
contribution than other chronic physical and mental
disorders to disability, needs for care and attendant
costs. These findings are not, however, reflected in
the results of the Global Burden of Disease Study
most recently conducted by the Institute of Health
Metrics and Evaluation (IHME), and, previously,
by the WHO. The IHME findings are particularly
discrepant with other data sources and methodological
approaches. The problem appears to arise first from
the Disability Adjusted Life Year (DALY) metric of
overall disease burden, which gives a much greater
weight to conditions associated with mortality, even

in later life, and second from the methods used to


attribute disability weights to individual conditions and
health states. This is a matter of concern given the
importance accorded to the Global Burden of Disease
estimates as a guide to prioritisation for research,
health and social care investment.

7.1.4 Cost
We have carried out a provisional update of our
previous estimates of the global societal economic
cost of dementia. We estimate the global societal
economic cost of dementia for 2015 to be US$818
billion, a 35% increase from the cost estimate for
2010, which was US$604 billion. Projecting this
trend forwards, we estimate that the global cost of
dementia will have reached US$1 trillion in 2018.
Around half of this increase can be attributed to growth
in the numbers of people with dementia, and half to
increases in per capita costs, particularly in low and
middle income countries.
88% of the costs in 2015 were incurred in what are
currently high income countries. If the same country
classification (World Bank 2009) is applied for 2015 as
for 2010, then the proportion of global costs incurred in
what were then LMIC has risen from 11% to 18%. While

Box 7.1

G7 Dementia Legacy Events


Sponsoring G7
countries

Setting

Date

Agenda

UK

London

June 2014

Finance and social impact investment

Canada and
France

Ottawa

September 2014

Harnessing the Power of Discoveries: Maximizing Academia and Industry


Synergies

Japan

Tokyo

November 2014

New Care and prevention models

USA

NIH Bethesda

February 2015

State of the Science/Global Research Collaboration

The key developments have been:


An explicit acknowledgement that dementia is a global issue, and that the effects of the future epidemic
will be felt particularly in low and middle income countries
A better understanding of the extent of the current treatment gap in terms of diagnosis, treatments,
services and support, and the need for care now, if we must wait for cure later
The need for a public health approach to treatment and care, with more focus on raising awareness,
creating Dementia Friendly Communities (DFCs), and providing accessible health and social care services
for all
A recognition of the importance of prioritisation of efforts towards brain health promotion and dementia
risk reduction, in an effort to reduce the future toll
New, and broader, priorities for research, going far beyond the original aim of developing a disease-course
modifying treatment
A commitment in principle to continue the G7 process, with sustainable leadership, and a defined set of
agendas

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Alzheimers Disease International: World Alzheimer ReporT 2015

the G7 countries alone account for 62% of the costs, a


remarkable 92% of the costs arise in the broader group
of G20 countries.
Around one fifth of total costs are attributed to direct
medical care with little variation by country income
level. However, the distribution between formal social
care and unpaid informal care varies considerably by
country income level with formal costs preponderating
in HIC while informal care is responsible for most costs
in LMIC.
This update benefited from a) the fully revised
and updated estimates of numbers of people with
dementia, b) improved data on per capita costs from
new cost of illness studies or analyses from several
high income countries (USA, UK, Germany, Norway,
Sweden, and Ireland), and c) more detailed data to
inform the imputation of the distribution of direct
medical and social care costs in low and middle
income countries from the 10/66 Dementia Research
Group studies in countries in several countries in
Latin America, India and China. We did not, however
conduct a fully systematic review of resource utilisation
and cost studies, and we updated cost estimates
solely on the basis of country-specific consumer price
index ratios between 2010 and 2015.

7.2 Global Action Against


Dementia
In December 2013, the UK government used its
presidency of the group of the worlds leading
economies (the so called G8 which later became the
G7 United States, Japan, Germany, France, UK, Italy,
Canada - following the suspension of Russia) to launch
a Global Action Against Dementia. The outcome of
the first summit was an impressive commitment to set
an ambition to identify a cure, or a disease-modifying
therapy, for dementia by 2025. This was supported
by a series of initiatives linked to research; increasing
funding, promoting participation in trials, collaboration
to share information and data; and the appointment of
a new global envoy for dementia innovation, Dr Dennis
Gillings. Over the course of four Legacy Events (see
Box 7.1) this agenda has broadened substantially,
with significant input from civil society (including
Alzheimers Disease International), the World Health
Organization, the Organization of Economic Cooperation and Development (OECD), G7 governments
and their policymakers, and dementia experts from
many fields. The voices and opinions of people with
dementia, who were not given a platform at the first
event, began to be heard.
Earlier this year, as a final event linked to the G7
Global Action Against Dementia, the World Health
Organization convened a First WHO Ministerial
Conference on Global Action Against Dementia with
the participation of 80 member states, 80 philanthropic
foundations, 45 NGOs and 4 UN Agencies. This was

Box 7.2

Overarching principles, integral


to global efforts
Empowering and engaging the full and active
participation of people living with dementia,
their caregivers and families, as well as
overcoming stigma and discrimination;
Fostering collaboration between all
stakeholders to improve prevention and care,
and to stimulate research;
Incorporating the aspects of dementia
prevention, care and rehabilitation in
policies related to ageing, disability and
noncommunicable diseases, including mental
health;
Building on and utilising existing expertise,
collaborative arrangements and mechanisms
to maximise impact;
Balancing prevention, risk reduction, care
and cure so that whilst efforts are directed
towards finding effective treatments and
practices and risk reduction interventions,
continuous improvements are made on care
for people living with dementia and support
for their caregivers;
Advocating for an evidence-based approach
and shared learning, allowing advances
in open research and data sharing to be
available to facilitate faster learning and
action;
Emphasising that policies, plans,
programmes, interventions and actions are
sensitive to the needs, expectations and
human rights of people living with dementia
and their caregivers;
Embracing the importance of universal health
coverage and an equity-based approach
in all aspects of dementia efforts, including
facilitation of equitable access to health and
social care for people living with dementia
and their caregivers.

a truly global event, offering proper representation


to the worlds 127 low and middle income countries,
alongside the G7 and the 67 other high income
countries. The call for action* was unanimously
adopted on 17th March 2015. Given the enormous
impact of the condition worldwide, the call notes that:

* http://www.who.int/mediacentre/news/releases/2015/action-ondementia/en/

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The Global Impact of Dementia

A sustained global effort is thus required to


promote action on dementia and address the
challenges posed by dementia and its impacts. No
single country, sector or organization can tackle this
alone.

The call for action identifies eight overarching


principles (Box 7.2), and 11 action points (Box 7.3).

7.3 Beyond the G7 process


The G7 countries, and their heads of government,
are to be congratulated for the priority that they have
accorded to dementia over the past two years. This is
on the back of new national policy initiatives, dementia
plans and strategic investment in most of these
countries, in the years leading up to the G7 process.
The game changer introduced by UK Prime Minister
David Cameron was the acknowledgement that
dementia was too big and too global an issue to be
addressed by nation states in isolation, and that transnational approaches and solutions would be required,
with an accent on cooperation and collaboration.
It was natural, in many ways, that the G7 should
initiate and lead this process. The worlds wealthiest
nations have borne the brunt of the first wave of the
dementia epidemic, and it is in these countries that
the fiscal challenges of meeting the rising demand for
health and social care are currently most acute. The
search for a treatment or cure is led by multinational
pharmaceutical industries based mainly in these
countries. However, it became clear to most over the
course of the G7 process that with a global epidemic
concentrated in low and middle income countries(1),
substantial problems with service coverage and access
to care(2), and, realistically, only modest expectations
for therapeutic advances(3), a much broader agenda
would be required. This would need to be supported
by a wider international coalition, and sustained over a
much longer period than the first phase of the Global
Action Against Dementia.

7.4 Building upon the Global


Action Against Dementia
The broader agenda comprises five key elements;
a global approach to a global problem; the need for
care now, if cure later; a public health orientation
(awareness, accessible services, and prevention); a
focus on equity and rights; and a rational approach to
research prioritisation.

7.4.1 A global approach, with an accent


on low and middle income countries
The worlds seven wealthiest economies, the G7,
currently account for 10% of the worlds population,
nearly half of its GDP and two thirds of net global
wealth. 21% of the worlds population of older people
live in G7 countries, and 28% of all people living

Box 7.3

Actions for people living with


dementia, their caregivers,
families and community
Raising the priority accorded to global efforts
for dementia on the agendas of relevant highlevel forums and meetings of national and
international leaders;
Strengthening capacity, leadership,
governance, multisectoral action and
partnerships to accelerate responses to
address dementia;
Promoting a better understanding of
dementia, raising public awareness and
engagement, including the respect for
their human rights, reducing stigma and
discrimination, and fostering greater
participation, social inclusion and integration
of people living with dementia;
Advancing prevention, risk reduction,
diagnosis and treatment of dementia,
consistent with current and emerging
evidence;
Facilitating technological and social
innovations to meet the needs of people living
with dementia and their caregivers;
Increasing collective efforts in dementia
research and fostering collaboration;
Facilitating the coordinated delivery of
health and social care for people living with
dementia, including capacity building of the
workforce, supporting mutual care taking
across generations on an individual, family
and society level, and strengthening support
and services for their caregivers and families;
Supporting a gender-sensitive approach
in the elaboration of plans, policies and
interventions aimed at improving the lives of
people living with dementia;
Promoting further work in identifying and
addressing barriers to dementia care,
particularly in low-resource settings;
Strengthening international efforts to support
plans and policies at all levels for people
living with dementia, in particular in low- and
middle-income countries;
Supporting the efforts of the World Health
Organization, within its mandate and work
plans, to fulfil its leadership role in full
collaboration with national and international
partners, to promote and monitor global
efforts on dementia.

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Alzheimers Disease International: World Alzheimer ReporT 2015

with dementia, generating 62% of all global societal


economic costs linked to dementia.
The worlds 20 major economies, the G20, account
for 64% of the worlds population. 76% of the worlds
population of older people live in these 43 countries,
and 80% of all people living with dementia, accounting
for 92% of all global societal economic costs.
Projecting forwards from 2015, global numbers of
people with dementia will have increased by nearly 85
million by 2050. 16% of these additional cases will be
in G7 countries, and 67% in G20 countries; therefore,
more than half of the growth will be occurring in G20
countries who are not members of the G7. Most
significantly, these include the populous and rapidly
developing middle income countries where population
ageing will be occurring most rapidly, represented in
the G20 by China, India, Indonesia, Brazil, Mexico and
Turkey.
Demand will rise most rapidly in low and middle
income countries, as the increasing numbers of people
affected drive increasing awareness. However, the
supply of services is restricted, given limited resources.
This applies most particularly to specialist healthcare
services, and the whole apparatus of long-term
community-based and residential care(4). Also, primary
care services are currently neither appropriately
designed nor trained to assume responsibility for
primary attention and continuing care; this is a general
problem for management of non-communicable
diseases in an ageing population(5), with particular
implications for dementia care(6). The seamlessness of
traditional extended family care systems was probably
always exaggerated(7;8), and will, increasingly, come
under strain given the pace of social, demographic
and economic change. The fiscal implications of these
transitions, in the context of increasing demands for
state-assured social protection and long-term care,
need urgent consideration by countries well beyond
the confines of the OECD(4;9).
It would seem logical for the G20 to assume political
leadership of the Global Action Against Dementia,
hence ensuring the involvement of countries in all
continents, including those that will be most affected
by the growing numbers of people with dementia
over the next generation. A petition to the Australian
government, to put dementia on the G20 agenda in
2014, although widely supported, was not successful.
Turkey will host the next G20 summit in Antalya, 1516th November 2015, and then hand over the chair
to China, home to the worlds largest population of
people living with dementia. This is therefore a highly
opportune moment to renew this call.
The World Health Organization Ministerial Conference
call for action has asked the WHO to fulfil its
leadership role in full collaboration with national and
international partners, to promote and monitor global
efforts on dementia. This is a welcome development.
The WHO is concerned, first and foremost, with

global public health. It has a role in monitoring health


trends, disseminating information, and providing
leadership, policy guidance and technical assistance
to governments. Much of its work is focused upon
resource-limited low and middle income countries. The
WHO has been particularly energetic and effective in
recent years in the dementia field. In 2009, dementia
was included among 10 priority neurological and
mental disorders for the WHO Mental Health Gap
Action Plan (mhGAP), seeking to close the treatment
gap by scaling up evidence-based packages of care to
be delivered by trained and supervised non-specialist
health workers(10;11). The WHO/ADI joint report,
published in 2012, signalled, through its title Dementia:
a public health priority, a new approach, emphasising
the need for awareness, policies and plans, scaled up
services accessible to all on an equitable basis, and a
focus upon prevention(12). The 2015 WHO World Health
Report focuses upon ageing and health. The WHOs
contribution to the G7 process has evidently been
another potential game-changer. However, we need
to be aware that the call for action is currently nothing
more than that. It does not commit nation states,
individually or collectively to any specific investments,
policies or actions. The call for action specifies,
in carefully chosen language that the signatories
will be supporting the efforts of the World Health
Organization, within its mandate and work plans.
These can only be extended through a motion for a
resolution proposed by several Member States, to the
World Health Assembly. This could call, for example,
for the WHO Secretariat to work with Member States to
develop a Dementia Action Plan. Such a plan, as was
the case, with the WHO Comprehensive Mental Health
Action Plan 2013-2020(13), could include specific
actions for Member States, international, regional and
national level partners, and the WHO Secretariat with
indicators and targets that can be used to evaluate
levels of implementation, progress and impact, and
hold governments to account.

7.4.2 Care now/cure later


On the one hand, 2025 is a cruelly long time to wait for
a cure or disease-modifying treatment for dementia.
On the other hand most participants in the G7
process acknowledged that even this would be a very
challenging target. While there has been a productive
pipeline of promising new agents with plausible
targets linked to Alzheimer's disease pathology, there
has been a dispiritingly high proportion of failures
in phase II human trials, and phase III definitive
randomised controlled clinical trials(2). This raises
legitimate questions regarding the validity of our
current disease models, and the continued willingness
of pharmaceutical companies to meet the heavy
research and development costs. Partnership between
industry, governments and universities, international
collaboration, and data and information sharing all

73

The Global Impact of Dementia

potentially have much to offer in maintaining and


increasing efforts in this direction.
In the meantime, clearly we cannot and should not
wait to implement currently available evidence for
services, treatments and care that improve the health
and wellbeing of people with dementia and their
carers. There are considerable challenges in achieving
acceptable levels of coverage and access to care.
Currently, far too few people with dementia receive a
diagnosis, let alone treatment and support. Around
half of those affected are not diagnosed in HIC, the
proportion diagnosed falling to below 10-20% in
LMIC where awareness is even lower(14-17). Even if the
progressive course of dementia cannot be altered,
symptomatic treatments and support are helpful.
Earlier diagnosis allows those affected to participate in
advanced care planning while they still have capacity
to do so(15). Education, training and support for carers
is effective in reducing carer strain and psychological
morbidity, and, in HIC, in delaying or avoiding transition
into care homes(18). Such interventions may be more
effective early in the disease course(15;19). Support
groups for people with dementia, acetylcholinesterase
inhibitors and cognitive stimulation to improve
cognitive function, and behavioural interventions for
depression are all effective interventions in early-stage
dementia(15). Early diagnosis and intervention is likely to
be cost-effective in HIC, assuming delayed or averted
transfer into costly institutional care settings(15). The
cost-effectiveness of scaling up diagnosis and care
in LMIC is unknown. However, the psychological and
economic strain on caregivers is substantial, and
compensatory benefits practically non-existent(20;21).
While we wait, in hope, for technological advances in
diagnosis, treatment and care we should be mindful
that delivery systems are currently hugely ineffective
worldwide, with very limited coverage of even the most
basic services. These problems need to be addressed,
urgently, with a balanced research agenda that gives
equal priority to translation of existing knowledge
into policy and practice (see section 7.4.6). Failure to
address these limitations also risks substantial ethical
problems regarding the ability of lower versus higher
income countries to implement, and benefit from
advances in treatment and care (see section 7.4.4).

7.4.3 A public health approach


Awareness
Raising awareness is a cornerstone of the public health
approach to addressing the dementia epidemic. In
Chapter 6 of the WHO/ADI report, Dementia: a public
health priority, a six stage incremental Acceptance
of Dementia model was proposed in which countries
might progress from stage 1) Ignoring the problem,
to 2) Some awareness, 3) Building dementia
infrastructure, 4) Advocacy efforts, 5) Policies and
dementia plans or strategies, to 6) Normalisation.
Pragmatically, it may not be possible to miss out

stages in this essentially bottom-up process, although


political will, prioritisation and investment from
governments will help to speed the transition.
For governments that have developed policies and
plans, the concept of Dementia Friendly Communities
has been particularly popular(22). The UK Prime
Ministers Challenge on Dementia* emphasises the
central role of people with dementia;
We would like people living with dementia to be
able to say that they know what they can do to help
themselves and who else can help them, and that
their community is working to help them to live well
with dementia.

The term dementia friendly has been applied


both to physical environments and communities. It
addresses in particular the lived experience of people
with dementia, seeking among other things, a change
in attitudes and behaviours towards dementia, for
people with dementia and their carers to be treated
with dignity and respect, for an end to stigma, and for
communities to be enabled to support people affected
by dementia so they can live well with dementia. A key
example is that of the Japanese Dementia Friends
model (copied in the UK) where a remarkable 6 million
friends (4.6% of the population), lightly trained by
105,000 dementia champions, are driving innovative
community programs across the country. The US
National Dementia Plan focuses more upon the
concept of dementia capable workforces, programs,
services, and systems, with a practical focus upon
building knowledge, capacity and skills in key services
to better meet the needs of people with dementia and
their caregivers(22).
In a thoughtful review, Lin and Lewis have highlighted
the complementary nature of the two approaches,
which both encourage inclusion and acceptance.
At the same time, they argue the need for a third
component, dementia positivity(22);
At first glance, this society (dementia capable
and dementia friendly) seems to have everything
to ensure a good life for people with dementia
and their families. However, without dementia
positivity, it is merely a society that tolerates and
respects differences. It is merely a society that
supports or takes care of its members. It is not a
society that truly sees people with dementia as
equal contributors. The desires of people with
dementia to make contributions to society and be
seen as persons with strengths and abilities have
been documented in books written by people
* Delivering major improvements in dementia care and research
by 2015 (Department of Health, 2012) https://www.gov.uk/
government/uploads/system/uploads/attachment_data/
file/215101/dh_133176.pdf
See Dr Mayumi Hayashis recent blog at https://ageingissues.
wordpress.com/2015/03/20/dementia-care-in-japan-is-beingsolved-through-volunteer-schemes-not-government/

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Alzheimers Disease International: World Alzheimer ReporT 2015

with dementia and their advocates alike, such as


Christine Brydens (2012) Who Will IBe When IDie,
John Zeisels (2010) Im Still Here, and Anne Davis
Bastings (2009) Forget Memory, to name a few.
People with dementia want society to accept their
disabilities. They also want society to see their
strengths and abilities. Without dementia positivity,
regardless of how well the society provides
resources, accommodations, services, activities,
and opportunities for people with dementia and
their families to stay engaged, it is merely a pseudo
social inclusion.

Accessible services
At the United Nations Second World Assembly on
Ageing (Madrid, 2002), governments of 159 nations
adopted the Madrid International Plan of Action on
Ageing (MIPAA), to respond to the challenges of
population ageing (23). The plan stressed the need
for equitable, affordable access to age-appropriate
healthcare, reflecting also the universal right to health
and access to medical care enshrined in the Universal
Declaration of Human Rights (1948), and the UN
Convention on the Rights of Persons with Disabilities
(2006), and consistent with the concept of universal
coverage that is likely to be at the heart of the UNs
new Sustainable Development Goals. Unfortunately,
in 2012, a 32 country case study conducted for a
UNFPA 10 year review of MIPAA(24) found that very little
progress has been made towards the achievement
of these objectives, particularly in LMIC and other
resource poor settings.
Problems of access to services are complex, and
include low awareness linked to limited help-seeking,
and financial barriers, when the need for care is
continuing, and reimbursement for health or social
care is either means-tested, or subject to insurance for
which coverage is less than complete, and where older
people have insufficient personal incomes to meet outof-pocket payments(4;6;25).
For low and middle income countries, a lack of
coverage of services is an even more pressing
problem. There are simply too few specialists
(geriatricians, psychiatrists, neurologists,
psychologists, specialist nurses, occupational and
physical therapists, and nutritionists) to provide
services for more than a tiny proportion of people
with dementia, mainly restricted to urban centres.
Similar resource limitations have been identified for
other chronic disease domains including global mental
health(26), palliative care(27), and global surgery(28). The
challenge for dementia care is particularly acute, given
that the demand for services will increase sharply,
and likely outstrip any efforts to expand the specialist
workforce. An important part of the solution must be a
move towards a task-shifting or, more appropriately,
a task-sharing approach, where much of the onus for
delivering care is placed upon non-specialist primary
care and community services, trained and supported

by more experienced specialists. This approach


has been championed in the global mental health
field(10;27;29). Scaling up such services is a complex
process, requiring changed roles and responsibilities,
additional resources, and new models for the delivery
of care. Specialists need to focus as much upon
service management, training and supervision, as on
the delivery of frontline care (reserved for complex
cases). In essence, they need to become agents of
public health, and attend as much to the coverage
of services, as to the quality of care provided to their
limited caseload.
Global problems require global solutions, and it is likely
that the task-sharing solution will have applications
in high income as well as low and middle income
country settings. It is becoming abundantly clear
that, in the face of the current dementia epidemic, all
health and social care systems should be considered
to be resource-poor. Given that half or more of all
people with dementia have not received a dementia
diagnosis, there are, arguably, insufficient specialist
services in high income countries to perform this
task in a timely fashion. The coordination or case
management of health and social care for people with
dementia across the evolving journey of care is both
critically important, and neglected(4). These roles are
probably best embedded in integrated community
health and social care services(30), and at the level of
primary care, where staff are best acquainted with the
person with dementia and their family, and best placed
to deliver person-centred care based on individual
values and preferences. Task-sharing models aim for
allocative efficiency, either by extending the coverage
of services at a similar cost, or providing the same
level of care output at a lower cost(31). These are highly
relevant objectives for health and social care systems
around the world. Rich developed nations do not have
a monopoly on solutions, and may have developed an
over-specialised model of care. There is potential here
for south-north as well as north-south learning and
knowledge translation.
Prevention
On the basis of the reviews conducted for the World
Alzheimer Report 2014, An analysis of modifiable risk
factors for dementia we concluded that the strongest
evidence for possible causal associations with
dementia (plausible, consistent, strong associations,
relatively free of bias and confounding) are those of
low education in early life, hypertension in midlife, and
smoking and diabetes across the life course(32). While
there was consistent evidence from several studies
for an inverse association between both physical
and cognitive activity and dementia incidence, more
research is necessary to confirm a causal relationship.
The pattern of association suggests two important
general mechanisms; a) cognitive or brain reserve
(education and occupational attainment enhancing
brain structure or function, modifying the impact of
neurodegenerative brain damage in late-life(33)) and;

75

The Global Impact of Dementia

b) vascular pathology, through which the effects of


midlife hypertension, smoking and diabetes may
be mediated. The report has added to a growing
consensus that risk reduction may, indeed be possible,
and that further research, and health promotion actions
are indicated(34;35). The first necessary step is a wider
acknowledgement and understanding that dementia
may, at least to some extent, be a preventable
condition.
Our best hope of ascertaining the likely impact of
increasing levels of education and improvements in
cardiovascular health may be to observe populations in
which such trends are prominent, to see whether these
are associated with a decline over time in the agespecific incidence of dementia. The review carried out
for this report, of secular trends in dementia prevalence
and incidence, provides equivocal evidence some of
which is consistent with the notion that the disease
frequency may already have started to decline in some
high income countries. However:
a) More robust research is required, in more settings,
and over longer periods into the future to determine
trends with more precision and their variation
between regions, countries and sub-populations.
b) It is perfectly possible that reductions in risk factor
exposures, linked to improvements in public health,
may reduce the incidence of dementia, but prolong
survival, with an uncertain, but possibly neutral
effect on age-specific prevalence.
c) While levels of education have increased all around
the world, cardiovascular health is becoming
increasingly compromised in many low and
middle income countries. Even with priority action
to address this problem(36), trends in dementia
incidence and prevalence in these settings may
therefore be in the adverse direction, at least in the
short- to medium-term.
We have not yet found sufficient evidence to alter
our assumption, for future projections, that the agespecific prevalence of dementia will remain constant
over time. For the time-being, prudent policymakers
should adopt a similar perspective. That should not,
however, deter them from vigorous attempts to reduce
the incidence of dementia by acting on the evidence
regarding modifiable risk factors. Detection and
treatment of diabetes and hypertension, reduction
in levels of obesity, smoking cessation, increased
physical activity, and better education are already
public health priorities for most countries worldwide.
Nevertheless, the message that dementia, alongside
heart disease, stroke and cancer, may be prevented
through increased adoption and more effective
implementation of these public health strategies is one
that policymakers and public need to hear. Failure to
act risks missed opportunities to mitigate the scale
of the future epidemic, or even allowing it to advance
more rapidly than we are currently predicting.

7.4.4 Equity and rights


There is much that is fundamentally unfair about
dementia and its impact upon individuals and
societies. It selectively impacts upon the old and frail,
women, those with less education, and fewer assets.
It rarely, but very significantly, blights the hopes and
expectations of those in the prime of their lives. It dims
the voices of those affected, just when they might have
most to tell us about their experiences of living with the
condition, and how they would wish their rights to be
respected. Given different global rates of population
ageing, the future epidemic will be concentrated in low
and middle income countries, where there are currently
the lowest levels of awareness, and the fewest
resources to meet the coming demand.
Equity is different. The basic principle is that all people
affected by the condition should be acknowledged
as having equal status and value, and should be
accorded equal access to diagnosis, and evidencebased treatment, care and support, regardless of
age, gender, socioeconomic status, ethnicity, or (at a
global level) country of residence. Evidently, from the
evidence presented in this report, and summarised in
this chapter, we are a very long way from achieving this
objective.
It is very encouraging that the WHO call for action
makes frequent reference to the inalienable human
rights of those affected, and to the need to give special
and focused attention to low and middle income
countries, and, above all emphasises;
a universal health coverage and an equity-based
approach in all aspects of dementia efforts,
including facilitation of equitable access to health
and social care for people living with dementia and
their caregivers.

Unless these problems are addressed, equity,


particularly for the majority of people with dementia
living in the worlds poorer countries will not be
achieved. With the focus on therapeutic innovations (a
disease-course altering treatment by 2025), there is a
danger that the lessons of the AIDS epidemic will be
forgotten. Nowadays, those living in Los Angeles and
Lusaka, Birmingham and Blantyre, and Phnom Penh
or Paris have an approximately equal opportunity, in
principle, to access an affordable HIV diagnosis and
life-changing treatment. However, the journey to this
point since the advent of antiretroviral therapy has
been far too long, with millions of lives lost. The rate
limiting step, after the affordability of medications was
addressed, was the weakness of healthcare delivery
systems. The belated achievement is, nevertheless,
a triumph for global health, and demonstrates that
with political galvanised by advocacy, and with global
collaboration, equity is attainable.
We would like, in this years World Alzheimer Report,
to draw attention to two further important equity
issues. One, gender, was highlighted in an ADI report

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Alzheimers Disease International: World Alzheimer ReporT 2015

issued earlier this year(37). The other, younger-onset


dementia, has been perennially neglected, including
in this report, due to a relative lack of high quality
data, and an accurate perception that, being a rare
condition it contributes relatively little to the overall
burden. However, this has resulted in a neglect of the
heightened individual impact, and the special needs of
those affected, which are poorly met.
Gendering
As highlighted earlier this year in an Alzheimers
Disease International global research review on women
and dementia, too little attention has been given to
the gendered aspects of the epidemic(37). Women
predominate amongst older people with dementia. This
is mainly because of womens greater life expectancy.
However, as highlighted earlier in this report (Chapters
2 and 3), age-specific prevalence and incidence of
dementia are also higher among women, particularly
at older ages. The reasons for this are not clearly
established, and more research would be justified,
seeking options for prevention and treatment. The ADI
report also revealed that there has been surprisingly
little research into the effect of gender upon care needs
and preferences from the perspective of the person
with dementia.
Care for people with dementia is also overwhelmingly
provided by women. Men and women approach the
caring role, cope, and seek support in different ways.
However, very little work has been carried out to
determine how health and social care professionals
should incorporate gender awareness into the support
that they provide to people with dementia and their
informal carers. The paid professional health and social
care workforce is, probably, even more overwhelmingly
female. In the UK, it has been estimated that 87%
of the dementia care workforce is female, a greater
proportion than the care workforce overall(38).
Dementia care workers were more likely to be female,
temporary agency staff and from an ethnic minority
group. As highlighted in the World Alzheimer Report
2013, there are widespread problems across high
income countries with the low status, low pay and lack
of professional development opportunities for the care
workforce, all of which pose considerable challenges
for maintaining and improving care quality(4). Paid or
unpaid, the fact that most carers across most if not all
cultures are women, needs to be carefully considered
from an equity standpoint. Women are already likely to
be relatively disadvantaged with respect to education,
career opportunities across the life course, income,
assets and (in older age) pension entitlements. Taking
on caring responsibilities for a person with dementia
can lead to social isolation, cutting back or stopping
work, and risks to physical and mental health(4).

unlike late-onset dementia, will not be apt to increase


in terms of numbers affected over time. However,
people with younger onset dementia and their
caregivers have specific age-related needs. The low
prevalence, unusual presenting features (particularly
neuropsychiatric symptoms) and broader differential
diagnosis may all contribute to a substantial delay
in obtaining a diagnosis (4.4 vs 2.8 years for lateonset dementia in one Dutch study)(39), which is likely
to have led to a substantial underestimate of true
prevalence(12). Younger-onset dementia is particularly
likely to have a genetic cause, and depending upon
the type of dementia and the family history, genetic
counselling and testing may be indicated(40). Few
studies have compared carer strain between youngeronset and late-onset dementia, but it is plain from a
comprehensive review of the literature that levels of
strain, anxiety and depression are very high among
carers (usually spouses and children), and family
conflict is often reported(41). There are likely to be
multiple contributory factors. People experiencing
dementia at a younger age may still be employed and
bringing up children; they are faced, while physically
robust, with the prospect of losing their active roles
and needing fundamentally to reappraise their future
hopes and plans. Carers, as well as the people
living with dementia, are more likely to be employed
than spouses of late-onset dementia patients, and
often need to take early retirement or reduce their
working hours. Financial difficulties were common(40),
exacerbated by health and social care systems in
some countries that do not provide the same range
of benefits and reimbursements for younger as for
older families(42). In most countries there are few or
no designated services for people with younger onset
dementia, and there are real challenges in meeting
this need, given the small numbers and geographic
dispersion of those affected(42). This was a significant
cause of distress for caregivers, who can be left feeling
angry and guilty when offered no option other than to
accept services designed for older people(41).
Many of these issues are addressed authentically and
sensitively in the novel Still Alice by Lisa Genova*, and
the film of the same name, for which Julianne Moore
was awarded the Academy Award (Oscar) for Best
Actress in 2014.
There is a clear need, enunciated by people living with
young onset dementia at several recent meetings, for
supported employment initiatives for people living with
younger onset dementia. As retirement ages increase
worldwide beyond the age of 65 years, this will be an
issue for late-onset dementia also. Carers, as well as
people with dementia, would benefit from more flexible
work arrangements.

Needs of younger people with dementia


Younger onset dementia (sometimes referred to as
early-onset) is typically defined as onset before the
age of 65 years. This is a rare condition(12), which,

* Gallery Books/ ISBN 9781439102817/ January 2009


- http://books.simonandschuster.com/Still-Alice/LisaGenova/9781439102817#sthash.SRRJJALd.dpuf

77

The Global Impact of Dementia

Workplacesshould be highlighted not only as a unique


place to support people living with dementia and their
carers, but also to encourage lifestyle changes to
reduce the risk of dementia.

7.4.6 Research prioritisation


Dementia research is currently grossly underfunded
with respect to the burden of disease, and the
societal economic cost. ADI, in conjunction with 42
other international and national non-governmental
organisations, has called for nation states to contribute
1% of their respective societal economic costs to
dementia research funding. This modest proposal, if
initiated, would result in research investment being
increased to over US$ 8 billion per annum. Currently,
the USA, by far the largest national contributor to
research, invests some US$731 million annually
through Federally-funded National Institutes of
Health programs. The $8.4 billion contribution would
be distributed pro rata, with US$6.9 billion from
high income countries, US$1.4 billion from middle
income countries, and US$19 million from low income
countries. This would amount to only around 0.003%
of GDP in low income countries, and 0.014% of GDP in
high income countries. A proportion of this fund could
be hypothecated to a Global Fund to address major
cross-national questions, and to give a much needed
focus to service development in low and middle
income countries.
The key question remains; to which priorities should
this research funding be directed? ADI and its INGO
partners have recommended that in addition to
search after a treatment or cure, governments should
increase efforts in other areas of research, such
as research into effective care models; prevalence,
incidence and mortality, prevention and risk reduction
to a comparable level, and increase the focus on
translating research into practice. This chimes with the
recommendation from a Lancet Editorial that;
Little research is carried out on scaling up of costeffective care strategies and integrated models of
care. Little is known about, for example, alternatives
to antipsychotic treatment, non-drug approaches,
or the place of cognitive stimulation. The dementia
research agenda should include studies of disease
mechanisms, epidemiology, early diagnosis,
prevention, risks and social determinants, nondrug
based approaches, and quality of life. The quest for
new drugs must not overshadow improving todays
care and patients lives. (2)

There is clearly a move towards a more balanced


research agenda. The WHO has led a research
prioritisation exercise, using well established Child
Health and Nutrition Research Initiative (CHNRI)
methodology, that essentially seeks to use the wisdom
of crowds to establish key priorities on the basis of
feasibility, answerability, potential to reduce disease
burden, and equity of impact(43). The results of this

exercise will be updated following expansion of the


consultation to include a broader base of stakeholders
and world regions, and then published in full and final
form. However, preliminary findings presented at the
WHO Ministerial Conference indicated that six of the
top 10 overall priorities were orientated to the delivery
of prevention and care (Table 7.1), whereas ratings on
the basis of potential for conceptual breakthrough
Table 7.1
Preliminary findings from the WHO research prioritisation
exercise overall priorities (presented at WHO Ministerial
Conference, March 2015)
1

Identify clinical practice and health system-based


interventions that would promote a timely and accurate
diagnosis of dementia in primary health care practices.

Develop and validate biomarkers including biological,


genetic, behavioral and cognitive markers for
neurodegenerative brain diseases causing dementia, to
identify similarities and differences between diseases
and dementia subtypes, and assess progression from
pre-manifest (pre-symptomatic) to late stage diseases.

Identify strategies to anticipate and deliver effective


and cost-effective late life and end of life care for
people with dementia, including advance care planning.

Determine the most effective interventions for


educating, training and supporting formal and informal
carer(s) of people with dementia.

Identify, validate and apply better outcome measures


for clinical trials of cognition, function and other
biomarkers for neurodegenerative diseases causing
dementia.

Understand the contributions of vascular conditions to


neurodegenerative diseases causing dementia.

Explore single and multi-domain approaches for


primary and secondary prevention of dementias
based on evidence on risk/protective factors and the
relationship with other chronic diseases.

Establish norms and standards for the highest


quality of care in residential and nursing homes and
approaches to assist families of people with dementia
to determine the optimal time to consider placement.

Evaluate the relative effectiveness and identify the


optimal models of care and support for people with
dementia and their carers in the community (e.g.
collaborative care, integrated health and social care,
case management) across the disease course.

10

Establish norms/standardize clinical trial methodology


and ethics of conducting research with new
pharmacological agents, and non-pharmacologic
interventions for diseases causing dementia.

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Alzheimers Disease International: World Alzheimer ReporT 2015

Table 7.2
Preliminary findings from the WHO research prioritization
exercise potential for conceptual breakthrough (presented
at WHO Ministerial Conference, March 2015)
1

Understand the basic biological mechanisms of


neuronal cell death involved in the initiation/onset and
progression of neurodegenerative diseases causing
dementia.

Understand the basic biological mechanisms


of dysfunction of cellular metabolism, and their
regulation in the initiation/onset and progression of
neurodegenerative diseases that lead to dementia.

Understand the role of inflammation and of the immune


system in the initiation/onset and progression of
neurodegenerative diseases that lead to dementia.

Determine the roles of non-neuronal brain cells


(such as microglia, astrocytes and macrophages) in
pathogenesis and progression of neurodegenerative
diseases that cause dementia.

Identify underlying mechanisms of resilience to


neurodegenerative diseases causing dementia at all
stages (such as cognitive reserve, protective genotypes,
and neuroprotection).

Understand the impact of the neurodegenerative


diseases causing dementia upon the structure and
function of neural systems and networks with the aim
of identifying new therapeutic targets.

Understand protein misfolding and propagation in


the brain and their role in the initiation/onset and
progression of neurodegenerative diseases causing
dementia.

Investigate how intrinsic biological ageing processes


may contribute to the neurodegenerative diseases
causing dementia.

Understand the contributions of vascular conditions to


neurodegenerative diseases causing dementia.

10

Understand the contribution of environmental factors to


neurodegenerative diseases causing dementia and their
interactions with other pathophysiological processes at
the epigenetic, molecular and systems levels.

conducted on nationally representative samples, and


could conveniently be performed nested within national
surveys of health and ageing. This would facilitate
secondary aims including a) monitoring changes in
dementia diagnostic coverage, access to and receipt
of dementia-specific services, b) changes in the
exposure to hypothesised modifiable risk factors for
dementia, and relating these to changes in dementia
prevalence and incidence, c) changes in formal and
informal care arrangements, and healthcare for people
with dementia, and their attendant societal costs.

7.5 Final conclusions and


recommendations
Alzheimers Disease International;
Applauds the action taken by the G7 in launching
a Global Action Against Dementia and recognises
the considerable efforts of the Global Dementia
Envoy, the World Dementia Council, and the G7
governments over the past 18 months
Hopes and expects that this initiative will now be
continued, with a broader agenda and a wider
representation of countries and regions most
affected by the ongoing epidemic
Would support and advocate for a transfer of
political leadership to the G20 group of nations,
assuming continued commitment and engagement
of the G7 nations to the cause
Wholeheartedly endorses all aspects of the call
for action issued at the WHO first Ministerial
Conference for Dementia
Welcomes the leadership role outlined for WHO in
the call for action and will continue to work closely
with this body and its member states to ensure
that people with dementia and their families are put
at the centre of all policies, in pursuit of equitable
access to comprehensive services for all people
with dementia worldwide, and the realisation of the
full potential for living well with dementia.
Believes work on the quality of care should be
a priority and applauds OECDs commitment to
evaluate dementia care models and make outcomes
measurable and transparent

favoured more basic research into disease


mechanisms.

Call to action

In reality, both approaches are required, and the only


question is the relative balance of research investment
into each area.

Alzheimers Disease International;

Given the focus for this report, we must also highlight


the need, worldwide, but especially in high income
countries, to re-engage with the neglected task of
monitoring the prevalence of dementia worldwide,
accompanied, ideally, with observation of any secular
trends in incidence and mortality, where longitudinal
research is feasible. Such studies should, ideally, be

1. Recognises the need for the call for action to be


translated into an operationalised Global Dementia
Action Plan, with clear targets and deliverables,
and will both advocate for and support interested
Member States to propose motions to the World
Health Assembly
2. Proposes that the elements of planning for dementia
at the global and country level that has the objective

79

The Global Impact of Dementia

of supporting the person with dementia to stay in


the community for as long as possible include;
a) Awareness raising of dementia
b) Creation of dementia friendly communities that
reduce stigma associated with the disease

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regular basis.

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81

The Global Impact of Dementia

Appendix A: Global Burden of Disease (GBD) Regions


Table A.1
GBD regions for which meta-analysis could be conducted
GBD Region

Countries (those with one or more studies


underlined)

Relationship to WHO
regions used for ADI/
Lancet estimates

Approach used to generate


regional prevalence and
numbers

Australasia

Australia, New Zealand

WPRO A

Apply estimates from metaanalysis.

Asia Pacific, High


Income

Brunei-Darussalam, Japan, Republic of Korea, Singapore

WPRO A except for Korea


(WPRO B)

Apply estimates from metaanalysis.

Asia, East

China, Democratic Peoples Republic of Korea, Hong Kong SAR,


Taiwan, Macao SAR

WPRO B except for Democratic


Peoples Republic of Korea
(SEARO D)

Apply estimates from metaanalysis.

Asia, South

Afghanistan, Bangladesh, Bhutan, India, Nepal, Pakistan

SEARO D except for


Afghanistan and Pakistan
(EMRO D)

Apply estimates from metaanalysis.

Asia, Southeast

Cambodia, Indonesia, Lao Peoples Democratic Republic,


Malaysia, Maldives, Mauritius, Mayotte, Myanmar, Philippines,
Reunion, Seychelles, Sri Lanka, Thailand, Timor-Leste, Viet Nam

Mainly SEARO B and WPRO B

Apply estimates from metaanalysis.

Europe, Central

Albania, Bosnia and Herzegovina, Bulgaria, Croatia, Czech


Republic, Hungary, Poland, Romania, Serbia, Montenegro,
Slovakia, Slovenia, The Former Yugoslav Republic of Macedonia

EURO B, except for Croatia,


Czech Republic and Slovenia
(EURO A)

Apply estimates from metaanalysis.

Europe, Western

Austria, Belgium, Channel Islands, Cyprus, Denmark, Finland,


France, Germany, Greece, Iceland, Ireland, Israel, Italy,
Luxembourg, Malta, Netherlands, Norway, Portugal, San Marino,
Spain, Sweden, Switzerland, United Kingdom

EURO A

Apply estimates from metaanalysis.

North America

Canada, United States of America

AMRO A

Conduct meta-analysis for USA.


Apply CSHA data for Canada,
then aggregate

Latin America,
Andean

Bolivia (Plurinational State of), Ecuador, Peru

AMRO D

Latin America,
Central

Colombia, Costa Rica, El Salvador, Guatemala, Honduras, Mexico,


Nicaragua, Panama, Venezuela (Bolivarian Republic of)

AMRO B except for Guatemala


and Nicaragua (AMRO D)

Apply estimates from metaanalysis conducted across all


four regions

Latin America,
Southern

Argentina, Chile, Uruguay

AMRO B

Latin America,
Tropical

Brazil, Paraguay

AMRO B

Sub-Saharan
Africa, Central

Angola, Central African Republic, Congo, Democratic Republic of


the Congo, Equatorial Guinea, Gabon

A mixture of AFRO D and


AFRO E

Sub-Saharan
Africa, East

Burundi, Comoros, Djibouti, Eritrea, Ethiopia, Kenya, Madagascar,


Malawi, Mozambique, Rwanda, Somalia, South Sudan, Sudan,
Uganda, United Republic of Tanzania, Zambia

AFRO E except for Comoros


(AFRO D) and Somalia and
Sudan (EMRO D)

Sub-Saharan
Africa, Southern

Botswana, Lesotho, Namibia, South Africa, Swaziland, Zimbabwe

AFRO E

Sub-Saharan
Africa, West

Benin, Burkina Faso, Cameroon, Cape Verde, Chad, Cote dIvoire,


Gambia, Ghana, Guinea, Guinea-Bissau, Liberia, Mali, Mauritania,
Niger, Nigeria, Sao Tome and Principe, Senegal, Sierra Leone,
Togo

AFRO D

ASIA

EUROPE

THE AMERICAS

AFRICA
Apply estimates from metaanalysis in sub-Saharan Africa
conducted across all four
regions

82

Alzheimers Disease International: World Alzheimer ReporT 2015

Table A.2
GBD regions for which meta-analysis could not be conducted
Region

Countries (those with one or more studies


underlined)

Relationship to WHO regions used


in ADI/ Lancet

Approach

Asia, Central

Armenia, Azerbaijan, Georgia, Kazakhstan,


Kyrgyzstan, Mongolia, Tajikistan, Turkmenistan,
Uzbekistan

EURO B, except for Kazakhstan


(EURO C)

Apply relevant Lancet/ ADI estimates to


each country and aggregate

Oceania

Fiji, French Polynesia, Guam, Kiribati, Micronesia


(Federated States of), New Caledonia, Papua New
Guinea, Samoa, Solomon Islands, Tonga, Vanuatu

WPRO B

Data from one study in Guam only


(indigenous Chamorros islanders.
Therefore use Lancet/ ADI WPRO B for all
countries

Belarus, Estonia, Latvia, Lithuania, Republic of


Moldova, Russian Federation, Ukraine

EURO C

Apply Lancet/ ADI EURO C estimates

Antigua and Barbuda, Aruba, Bahamas, Barbados,


Belize, Cuba, Curacao, Dominican Republic, French
Guiana, Grenada, Guadaloupe, Guyana, Haiti,
Jamaica, Martinique, Puerto Rico, St. Lucia, St.
Vincent and the Grenadines, Suriname, Trinidad and
Tobago, United States Virgin Islands

AMRO B, other than Haiti (AMRO


D) and Cuba (AMRO A)

Use meta-analysed estimates for Cuba,


10/66 estimates for Dominican Republic
and Puerto Rico for those countries.
Jamaica prevalence for this country.

Algeria, Bahrain, Egypt, Iran (Islamic Republic of),


Iraq, Jordan, Kuwait, Lebanon, Libya, Morocco,
Oman, Qatar, Saudi Arabia, State of Palestine,
Syrian Arab Republic, Tunisia, Turkey, United Arab
Emirates, Western Sahara, Yemen

EMRO B, except for Egypt, Iraq,


Morocco and Yemen (EMRO D),
Algeria (AFRO D) and Turkey
(EURO B)

ASIA

EUROPE
Europe, Eastern

THE AMERICAS
Caribbean

Apply relevant Lancet/ ADI estimates to


other countries and aggregate

AFRICA
North Africa /
Middle East

Apply meta-analysed Turkey estimates to


Turkey.
Apply Egypt meta-analysed estimates
to Egypt and other EMRO D and AFRO D
countries.
Apply relevant Lancet/ ADI estimates to
other countries and aggregate

About ADI

About Bupa

Alzheimers Disease International (ADI) is the international


federation of Alzheimer associations throughout the
world. Each of our 83 members is a non-profit Alzheimer
association supporting people with dementia and their
families.

Bupas purpose is longer, healthier, happier lives.

ADIs vision is an improved quality of life for people with


dementia and their families throughout the world. ADI
aims to make dementia a global health priority, to build
and strengthen Alzheimer associations, and to raise
awareness about dementia worldwide. Stronger Alzheimer
associations are better able to meet the needs of people
with dementia and their carers.

What we do
Support the development and activities of our member
associations around the world.

As a leading global health and care company, we


offer health insurance, medical subscription and
other health and care funding products; we run care
homes, retirement and care villages, primary care,
diagnostic and wellness centres, hospitals and
dental clinics. We also provide workplace health
services, home healthcare, health assessments and
long-term condition management services.
We have 29m customers in 190 countries. With no
shareholders, we reinvest our profits to provide more
and better healthcare and fulfil our purpose.
We employ almost 80,000 people, principally in the
UK, Australia, Spain, Poland, New Zealand and Chile,
as well as Saudi Arabia, Hong Kong, India, Thailand
and the USA.

Encourage the creation of new Alzheimer associations


in countries where there is no organization.

For more information, visit bupa.com.

Bring Alzheimer organizations together to share and


learn from each other.

About Bupas social care services


around the world

Raise public and political awareness of dementia.

Bupa is committed to tackling the toughest


challenges in healthcare, including dementia. We
want to set the standard for person-centred care and
be recognised as a global leader in helping people
live well with dementia and Alzheimers disease.

Stimulate research into the prevalence and impact of


Alzheimers disease and dementia around the world.
Represent people with dementia and families in
international platforms at the UN and WHO

Key activities
Raising global awareness through World Alzheimers
Month (September every year).
Providing Alzheimer associations with training
in running a non-profit organization through our
Alzheimer University programme.
Hosting an international conference where staff and
volunteers from Alzheimer associations meet each
other as well as medical and care professionals,
researchers, people with dementia and their carers.
Disseminating reliable and accurate information
through our website and publications.
Supporting the 10/66 Dementia Research Groups
work on the prevalence and impact of dementia in
developing countries.
Supporting global advocacy by providing facts and
figures about dementia, and monitoring as well as
influencing dementia policies.
ADI is based in London and is registered as a nonprofit organization in the USA. ADI was founded in 1984
and has been in official relations with the World Health
Organization since 1996. You can find out more about
ADI at www.alz.co.uk.

Bupa has significant expertise and networks, with


approximately three-quarters of residents in our care
homes living with dementia, making us the leading
international provider of specialist dementia care.
During a given year, we care for more than 65,000
people in over 450 care homes and retirement
villages in the UK, Spain, Australia, New Zealand
and Poland.
We combine experience and expertise to care for
our residents living with dementia. Our philosophy
of care is based on a person first approach
which revolves around each persons background,
experiences, values, hobbies and what makes them
happy, and seeks to understand who they are and
the reality in which they are living.
We are committed to shaping a world where people
can live well with dementia today, and reduce the risk
of dementia for future generations. That is why we
are proud to partner with ADI, and together we have
outlined for the first time what we believe are the
rights of people living with dementia, wherever they
are in the world. Our joint Global Dementia Charter
I can live well with dementia has been endorsed by
people living with dementia, and together with ADI
we intend to make it a reality.
To download the charter and find out more, visit
www.bupa.com/dementia

Alzheimers Disease International:


The International Federation
of Alzheimers Disease and
Related Disorders Societies, Inc.
is incorporated in Illinois, USA,
and is a 501(c)(3) not-for-profit
organization

Alzheimers Disease International


64 Great Suffolk Street
London SE1 0BL
UK
Tel: +44 20 79810880
Fax: +44 20 79282357
www.alz.co.uk